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| Children Diagnosed With Cancer: Understanding the Healthcare System | |
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When a young person is diagnosed and treated for cancer, both the patient and the family enter the strange, complex, and often frightening world of modern medicine. Hospitals and major medical centers can be big, confusing places with seemingly endless corridors and many buildings. Hospital rooms can be drab and scary. Professionals and staff members have questions to ask, tests to perform, and information to share. But medical terms can sound like a foreign language. There are endless forms to be completed. Contact with insurance or managed care providers increases as families check coverage, try to get approval for tests and procedures, or question payment for care. The schedules and routines of daily family life are changed to fit in the time-consuming treatment plan. Family members are separated as one parent returns to work, one cares for the sick child, and siblings go to school. Parents must give up some control of their sick child and place their trust in the strangers that make up the cancer care team. But with time and experience, patients and families get to know the medical centers and other places where treatment is given. They memorize the route and figure out all the shortcuts from home to the hospital. They learn the way to the cafeteria. They find the spots that offer privacy. They bring blankets and pictures from home to brighten rooms. They pack snacks and toys and books for clinic visits. They learn their way around miles of hallways. The staff members become real people and some key relationships start to form. Children with cancer and their parents adjust to their new world and become reluctant experts in childhood cancer. If you have not yet read our information, Children Diagnosed with Cancer: Dealing with Diagnosis, you may want to read it on our Web site. Or you can call us to order a copy. Here are some tips to help patients and families begin to understand and cope with the health care system:
What is comprehensive care? With most illnesses of childhood or adolescence, parents can rely on their own knowledge and skills, or those of their doctor for an accurate diagnosis and treatment. But cancer requires the help of a team of specialists trained to deal with different types of cancer and many types of treatment. These include surgery, radiation therapy, chemotherapy, bone marrow and stem cell transplants, and immunotherapy. Treating childhood cancer often means consulting with more medical specialists for help if any problems come up. Other specialists can also help patients and family members address the social, emotional, educational, and spiritual issues that are part of childhood cancer. Comprehensive care is an approach that cares for the whole patient and all his or her needs, not just the medical or physical ones . Comprehensive care -- using the services of many professionals working together -- is the standard approach at all major medical centers that treat young people with cancer. The key aspects of well-designed comprehensive care are:
What is a Comprehensive Cancer Center? The National Cancer Institute (NCI) identifies certain medical centers as Comprehensive Cancer Centers because they meet special requirements. These centers must:
The NCI also identifies certain hospitals as Cancer Centers. These centers must also meet certain NCI standards. Studies have shown that outcomes (such as survival rates) are better for children treated at hospitals such as these, which are staffed by childhood cancer specialists. Clinical trials for children with cancer Most major centers in the United States that treat childhood cancer patients are members of COG or Children's Oncology Group. This is a clinical trials group devoted only to childhood and adolescent cancer research, and is supported by the National Cancer Institute. Treatment centers must follow strict guidelines to ensure that patients and families are fully informed about the potential value and risk of each clinical trial. After they have detailed information about the clinical trial, parents have the chance to ask questions. If they agree to have their child take part in the clinical trial, they must sign the consent form. This is referred to as giving informed consent. Patients then are randomly assigned (randomized) by computer to get either the new treatment being studied or standard treatment. Families are free to reject enrolling their child in a clinical trial and can choose instead to get the standard treatment, which is treatment generally accepted as the best currently available. You can get more information in Clinical Trials: What You Need to Know, which you can get from our Web site or by calling us. Where are children and adolescents treated? Most children with cancer are treated at large pediatric cancer centers. And most are in clinical trials sponsored by the NCI through the Children’s Oncology Group. The NCI also supports Comprehensive Cancer Centers (which meet certain standards dealing with basic research and patient treatment) and Community Clinical Oncology Centers. Several medical facilities are members of the COG in the United States and abroad that treat pediatric cancer patients. You can learn which ones they are and how to find a COG hospital near you in our information, Pediatric Cancer Centers. Call us for a copy. When hospitalized, children and teens are treated on inpatient units in medical centers or community hospitals. Outpatient treatment (when the child is not in the hospital) may take place in hospital clinics, doctor's offices, or at home. When they are treated at home, patients usually get services from a home health agency. These services can include teaching, checking weight and vital signs, giving chemotherapy or medicines by vein, and other types of care. Local pediatricians or family practice doctors may be involved in giving chemotherapy, too. They may also take part in evaluating and treating symptoms, with guidance from the pediatric oncologist who is managing the child's cancer treatment. This helps avoid long stays in the hospital. Every effort is made to have children go to school and continue their normal activities as much as possible while they are being treated. Who are the members of the comprehensive health care team? Many experts from different disciplines (medicine, nursing, social work, and others) are part of the cancer care team available to help patients and families. They may be involved from the days before diagnosis through the months and years following the end of treatment. They offer many different services and programs. Team members work together to figure out what each patient and family need in order to best cope with cancer and its treatment. They design and coordinate a personal plan of care. While in the hospital, patients and families will see some team members every day. Others will only come when help is needed with certain issues. During clinic visits the same or even more team members may be available. When patients are at home, team members generally stay in touch and offer help by phone or arrange community care. Every treatment center is unique, so teams will have different members in different settings. In the time just before or just after diagnosis, parents are usually told about, or introduced to, all members of the cancer care team. All teams have doctors, nurses and social workers. Teams may also include psychologists or psychiatrists, recreation therapists or child life workers, teachers, and chaplains. Most teams think of parents as team members and want them to have an active role in caring for their child. Children and adolescents, if they are mature enough, also are part of the team. Types of doctors who help care for children with cancer Pediatric oncologist: a doctor who specializes in cancers of children. They generally are board-certified (have passed written national exams). They plan and direct cancer treatment. In teaching hospitals they serve as the doctor in charge. There might be more than one on the team, in which case they might rotate (switch places from one day to the next). Pediatric hematologist: a doctor who specializes in diseases of the blood and blood-forming tissues of children Pediatric hematology or oncology fellows: pediatricians training to become hematologists or oncologists Pediatric residents: doctors training to become pediatricians. They are in teaching hospitals, usually doing a rotation on the hematology or oncology service. Medical students: although not yet doctors, third and fourth year medical students in teaching hospitals are assigned monthly rotations on the hematology or oncology services and help care for patients. Radiologist: a doctor with special training in diagnosing diseases by reading x-rays and other types of imaging studies, for example, CT scans and magnetic resonance imaging (MRI) Pediatric surgeon: a doctor who performs surgery to treat medical problems Thoracic surgeon: a doctor who performs surgery on the chest cavity Neurosurgeon: a doctor specializing in operations on the brain, spine, or other parts of the nervous system Neurologist: a doctor who treats the problems of the nervous system Ophthalmologist: a medical doctor who specializes in diseases of the eye Orthopedic surgeon: a surgeon who specializes in diseases and injuries of the bones Pathologists: doctors who specialize in the diagnosis and classification of diseases by lab tests such as looking at tissue and cells under a microscope. The pathologist decides whether a tumor is cancer, and, if it is, the exact cell type and grade. Psychiatrists: medical doctors specializing in mental health and behavioral disorders. Psychiatrists prescribe medicines and can also provide counseling. Urologist: a doctor who specializes in treating problems of the urinary tract in both sexes, and of the genital area in males Endocrinologist: a doctor who specializes in diseases related to the glands of the endocrine system, such as the thyroid, pancreas, and adrenal glands Gynecologist: a doctor who specializes in women's health and the female reproductive system Anesthesiologist: a doctor who specializes in giving medicines or other agents that prevent or relieve pain, especially during surgery Other doctors in the medical center and its clinics may play a part in caring for the child or teen with cancer, depending on the diagnosis, treatment plan, or symptoms that develop during the course of treatment. All work closely with the basic cancer care team to coordinate care. Other professionals who may help care for a child or teen with cancer There are many professionals and specialists other than doctors who may work with your child or family. Here are just a few more you may meet as your child is treated. Radiation therapists: people with special training to work the equipment that delivers radiation treatment Pharmacologists: professionals trained in understanding the properties and uses of drugs. They may consult with your cancer team about the uses, reactions, and interactions of drugs used to treat cancer and manage symptoms Dietitians: experts in the area of food and diet; a registered dietitian (RD) has at least a bachelor's degree and has passed a national exam Nurses: like doctors, nurses have different roles and titles based on their education and training. Nurses help care for and treat children and teens with cancer. They play an important part in teaching the patient and family about cancer and its physical and emotional effects. They also help set up care for the patient in his or her home community when referrals are made to home health agencies Teams of nurses may include: Oncology Clinical Nurse Specialists (may also be called Advanced Practice Registered Nurses or APRNs in some states): registered nurses with a master's degree in oncology nursing who specialize in the care of cancer patients. Oncology nurse specialists may prepare and give treatments, monitor patients, prescribe and provide supportive care, and teach and counsel patients and their families Nurse practitioners (also called Advanced Practice Registered Nurses or APRNs): registered nurses, usually with a master's or doctoral degree, who have passed a national certification exam. Certified nurse practitioners diagnose and manage illness and disease, usually working closely with a doctor. In many states, they may prescribe medicines. Certified Pediatric Oncology Nurses (CPONs): registered nurses who specialize in working with pediatric cancer patients, and who have passed an exam given by the Oncology Nursing Certification Corporation (ONCC) Registered nurses (RN): nurses with associate or bachelor degrees who are licensed by their states to practice nursing. They give medicines (often including chemotherapy), start and monitor IV medicines, take vital signs, and provide other hospital and clinical care. They also provide patient and family education. Licensed practical nurses (LPN): nurses who have completed training in a vocational school or community college program and have passed a state licensing exam. They do many skilled tasks for patients at the bedside or in clinics. Oncology social workers: a person with a master's degree in social work who is an expert in coordinating and providing non-medical care to cancer patients. The oncology social worker provides counseling and assistance to people with cancer and their families. They can help you and your child talk with the cancer care team and they can speak up on issues that are important to you. They can also help with issues such as financial problems, housing (when treatments must be taken at a facility away from home), and finding child care. Pediatric psychologists: Psychologists generally have doctoral degrees and are licensed to practice after passing a written exam. Some psychologists specialize in oncology. They are also part of many comprehensive care teams. They help patients understand and talk about their cancer. They are skilled in helping young people use a variety of techniques to get through surgery, radiation treatment, chemotherapy, nausea, pain, IVs, injections, procedures, scans, and other tests. The psychologist also may work with patients, parents, and other team members to look at educational needs and help with school issues. They evaluate a child’s mental and emotional state and provide counseling to children and teens to help them cope with their illness. They often refer patients to mental health providers and services in the family's home community. There usually is a fee associated with their professional services, but insurance may cover at least part of it. Recreational therapists or child life workers: These team members encourage children and adolescents to take part in play activities designed to maintain and improve physical and mental health. Such activities also provide distraction and relief of stress and anxiety during treatment, tests, and procedures. These experts also work closely with social workers, team psychologists, and psychiatrists. They generally have advanced college degrees. School teachers: Teachers are often part of comprehensive care teams and must have the same training, credentials, and state licenses as all teachers. They bridge the gap between the hospital and school, and teach students based on plans outlined by the patients’ teachers in their regular school. They are usually available in both inpatient and outpatient settings. Chaplains or pastoral counselors: They help care for the spiritual needs of the patient and family and are available in most medical centers. They often coordinate their efforts with a family's pastor or spiritual caregiver. Along with a divinity degree and other advanced degrees, chaplains often have had special training in working with the ill and dying. Pastoral counselors have special training in counseling, as well as in divinity or theology. In teaching hospitals they may be involved in teaching and training. Talking with the health care team Good communication among patients, families, and health care team members is very important. The intensity, complexity, and length of treatment and follow-up care require that everyone involved have confidence and trust in one another and be able to work well together. Most of the time, children with cancer and their families develop a bond with the doctors, nurses, and other team members providing care. But sometimes, despite the competence of the caregivers, certain personalities and styles may clash and all may not go smoothly. Fortunately, patients and parents usually find that there are certain team members with whom they can form helpful relationships and have good communication. Confidence is the result of knowing that doctors and all team members are well trained and experienced in treating cancer in young people, and that the facility meets the highest standards. Information about the education and credentials of all team members should be readily available. The institution's status and reputation can be researched quickly. But trust in individuals will only come with time and the experience of sharing decisions and going through diagnosis and treatment. Parents are the experts when it comes to their children. It is important for them to have that expertise recognized, just as it is important for professionals to have their knowledge and skills recognized. Parents can help team members learn how best to deal with their children. On the other hand, health professionals who have worked with many children who have cancer can often give parents new ideas to try when the old ones don't work. Good communication comes out of mutual respect for what each person brings to the joint effort to give the child with cancer the best possible care. Communication should be clear, direct, and honest. Team members need to be sure that they give complete information, and that they use words that patients and families can understand. In the same way, the patient and family members need to state their thoughts, opinions, and feelings clearly and ask their questions directly. They also need to feel certain that they are being heard. Because of the emotional impact of a cancer diagnosis, it is often necessary to repeat conversations and to ask questions more than once. This is normal, and it is better to do this than have misunderstandings. Here are tips for good communication with the health care team:
Using psychosocial support services Childhood cancer affects all aspects of family life. For this reason, the current approach to care pays attention to all parts of the child's life and to the child's family. Most centers have a broad range of services and programs to support children and family members through the entire cancer experience. This includes diagnosis through treatment and even the months and years after treatment. In many centers these services and programs are available to all and are free. Having a child with cancer is usually a new experience for all family members. It can be very stressful, so it is no surprise that families need education, support, and counseling to cope with it. All support services are optional, but parents are more likely to be satisfied with the overall care of their child if they take advantage of what is available. Psychosocial help from the cancer team Some of the common types of services available from psychosocial professionals on the team are: Advocacy (including financial advocacy): helps children and families understand and manage the complex medical care system and identify and make use of programs, financial help, policies, and laws Education: helps families learn about the normal social and emotional effects of a cancer diagnosis and treatment for children and families, about coping strategies, and about stress management and other helpful techniques Supportive counseling: provides listening, empathy, and a way for children and family members to express feelings that result from the stress of cancer Psychotherapeutic and behavioral interventions: help children and family members manage anxiety, fear, anger, guilt, feelings of depression, and even physical problems, such as the nausea that can happen before treatment medicines are given (anticipatory nausea) Resource provision or referral: helps families to get meals, lodging, transportation, and/or emergency assistance Consultation: provides community-based psychosocial professionals for illness-related services to children and families Programs in communities and medical centers There are also many different types of programs available to children and families. Some of these are provided in the hospital setting and others are more likely to be found in the community. They can usually be found through team social workers, psychologists, and nurses. Some kinds of programs that may be offered are listed below. Support groups These may be for parents, siblings, or children with cancer. They may be only for certain groups of patients, such as teenagers or brain tumor patients. Some are offered in hospitals and clinics, and others through organizations such as the American Cancer Society, the Leukemia & Lymphoma Society, or the Candlelighters Foundation. School programs Medical centers may have organized school programs, planned school re-entry programs, education programs for staff members at the child's or sibling's school, and contact with classroom teachers or teachers who teach homebound or hospitalized students. Some use volunteers for tutoring. Patient-parent visitation programs Where available, these programs help parents meet other parents based on common factors such as children's ages, diagnoses, or the area in which they live. Buddy programs These programs use volunteers (sometimes university or medical students) to play with or befriend patients. Summer camps Many medical centers, communities, or agencies such as the American Cancer Society sponsor summer camps for children with cancer and sometimes siblings, too. The focus is on the fun aspects of the camping experience, rather than on having cancer. Special events Medical centers often develop special programs to meet fundraising, recreational, or educational needs of children with cancer and families, such as conferences on certain diagnoses, parent weekends, picnics, and survivors’ days. Wish fulfillment organizations Many agencies are set up to grant the wishes of seriously ill children, including cancer patients. Some accept parental referral, but most ask for referrals from a doctor or other team member. Ronald McDonald Houses These houses originally were created to provide a home away from home for children with cancer and their families. Now they often serve children with other serious illnesses, too. They provide parents and children who are outpatients a place to get away and relax, offer another option besides staying in the hospital, and have low or no-cost housing for families during treatment. They also help provide parent-to-parent connections and support. Additional resources More information from your American Cancer Society We have selected some related information that may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-227-2345.
The following books are available from the American Cancer Society. Call us at 1-800-227-2345 to ask about costs or to place your order.
National organizations and Web sites* Along with the American Cancer Society, other sources of information and support include: National
Dissemination Center for Children with Disabilities (NICHCY)
American Brain
Tumor Association Children's Brain
Tumor Foundation American Pain
Foundation CaringBridge Candlelighters™
Childhood Cancer Foundation CureSearch
National Childhood Cancer Foundation The Lance
Armstrong Foundation National Brain
Tumor Society National Cancer
Institute Hair Club for
Kids The National
Children's Cancer Society, Inc. National
Organization for Rare Disorders Patient Advocate
Foundation Starlight
Starbright Children's Foundation The Leukemia
& Lymphoma Society Web sites for teens and children 2bMe Beyond the Cure
(part of the National Children's Cancer Society for teens) Fertile hope Group Loop Cancer.net
(was: People Living with Cancer)
Cancer Kids Cancer Really
Sucks Teens Living
with Cancer I'm too young
for this SuperSibs! Other publications* For adults 100 Questions & Answers About Your Child's Cancer, by William L. Carroll and Jessica Reisman. 2004. Cancer & Self-Help: Bridging the Troubled Waters of Childhood Illness by Mark A. Chester and Barbara K. Chesney. University of Wisconsin Press, 1995. Care for Children and Adolescents with Cancer: Questions and Answers. National Cancer Institute. Available at: www.cancer.gov/cancertopics/factsheet/NCI/children-adolescents or call 1-800-332-8615. Childhood Brain and Spinal Cord Tumors: A Guide for Families, Friends, and Caregivers, by Tania Shiminski-Maher, Patsy McGuire Cullen, and Maria Sansalone. O'Reilly and Associates, 2001. Childhood Cancer: A Parent's Guide to Solid Tumor Cancers, by Honna Janes-Hodder and Nancy Keene. O'Reilly and Associates, 1999. Childhood Cancer: A Handbook from St Jude Children's Research Hospital, by Grant Steen and Joseph Mirro (editors). Perseus Publishing, 2000. Childhood Cancer Survivors: A Practical Guide to Your Future, by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. O'Reilly and Associates, 2000. Children with Cancer: A Comprehensive Reference Guide for Parents by Jeanne Munn Bracken and Pruden Pruden. 2nd Ed. Oxford University Press, 2005. Educating The Child With Cancer: A Guide for Parents and Teachers, edited by Nancy Keene. Candlelighters Childhood Cancer Foundation, 2003. Living with Childhood Cancer: A Practical Guide to Help Families Cope, by Leigh A. Woznick and Carol D. Goodheart. American Psychological Association, 2002. Surviving Childhood Cancer: A Guide for Families by Margo Joan Fromer. New Harbinger Publications, 1998. When Bad Things Happen to Good People.by Harold Kushner. G.K. Hall, 1982. When Someone You Love is Being Treated for Cancer. National Cancer Institute. Available at: www.cancer.gov/cancertopics/when-someone-you-love-is-treated, or call 1-800-332-8615. Young People with Cancer: A Handbook for Parents. National Cancer Institute, 2003. Available at: www.cancer.gov/cancertopics/youngpeople, or call 1-800-332-8615. Your Child in the Hospital: A Practical Guide for Parents. 2nd Ed. By Nancy Keene. N. O'Reilly & Associates. 1999. (Also available in Spanish) Books for children Although these books are intended for children, younger kids are helped more when an adult reads with and helps the child reflect about what different parts of the book mean to the child. Chemo, Craziness and Comfort: My Book about Childhood Cancer by Nancy Keene. Candlelighters Childhood Cancer Foundation, 2002. Can be ordered from www.candlelighters.org. For ages 6 to 12. Childhood Cancer Survivors: A Practical Guide to Your Future (2nd Ed.), by Kathy Ruccione, Nancy Keene, and Wendy Hobbie, 2006. For older teens. Going to the Hospital, by Fred Rogers. Paperstar Book. 1997. For children 4 to 8. Life Isn't Always A Day at the Beach: A Book for All Children Whose Lives Are Affected by Cancer by Pam Ganz. High-Five Publishing, 1996. Workbook for 6 to 10. Little Tree: A Story for Children with Serious Medical Problems, By Joyce C. Mills. Magination Press, 2003. For ages 4 to 8. Me and My Marrow by Karen Crowe. Fujsawa Healthcare 1999. You can buy it as a book, but it's also available online at: www.meandmymarrow.com/book/toc_ie.htm. For teens. My Book for Kids with Cansur [sic], by Jason Gaes. Viking Penguin, 1998. My Book for Kids with Cansur: A Child's Autobiography of Hope. For ages 4 to 8. Oncology, Stupology…I Want to go Home by Marilyn K. Hershey. Butterfly Press , 1999. (Also available in Spanish) For ages 8 to 12. The Amazing Hannah, Look at Everything I Can Do by Amy Klett. Candlelighters Childhood Cancer Foundation, 2002. (also available in Spanish) What About Me? When Brothers and Sisters Get Sick, by Allan Peterkin and Frances Middendorf. Magination Press, 1992 For brothers and sisters of a child with cancer. For ages 4 to 8. When Someone Has a Very Serious Illness: Children can learn to cope with loss and change, by Marge Heegaard. Woodland Press, 1991. For ages 6 to 12. Why, Charlie Brown, Why? A Story About What Happens When a Friend is Very Ill, by Charles M. Schultz. Ballantine Publishing Group, 1990. For ages 6 to 12. *Inclusion on this list does not imply endorsement by the American Cancer Society. No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-227-2345 or visit www.cancer.org. References Bleyer WA. The impact of childhood cancer in the United States and the world. CA- Cancer Journal for Clinicians. 1990; 40:355-367. (6): 1345-1336. Bracken JM. Children with Cancer: A Comprehensive Reference Guide for Parents. New York: Oxford University Press, 1986. Fromer MJ. Surviving Childhood Cancer: A Guide for Families. Oakland, Ca, New Harbinger Publications, 1998. Janes-Hodder H, Keene N, Hodder HJ. Childhood Cancer: A Parent's Guide to Solid Tumor Cancer. Sebastopol, Ca, O'Reilly & Associates, 1999. Keene N. Childhood Leukemia: A Guide for Families, Friends & Caregivers. Cambridge, Ma: O’Reilly & Associates, 1997. Keene N, Prentice R. Your Child in the Hospital: A Practical Guide for Parents. Cambridge, Ma: O’Reilly & Associates, 1997. Lauria MM, Hockenberry-Eaton M, Pawletko TM, Mauer A. Psychosocial protocol for childhood cancer: A conceptual model. Cancer. 1996; 78. Lozowski-Sullivan S. Know Before You Go: The Childhood Cancer Journey. Bethesda, Md: The Candlelighters Childhood Cancer Foundation, 1998. Morrra M, Potts E. Choices. New York: Avon Books, 1994. Steen RG, Mirro J (editors). Childhood Cancer: A Handbook from St. Jude Children's Research Hospital. Cambridge, Ma. Perseus Publishing, 2000. Last Medical Review: 06/01/2009 |