If you or a loved one has been diagnosed with cancer, feeling overwhelmed is normal. Not only are you dealing with distressing news, but suddenly you need to understand a lot of new terms, make decisions about what treatment to get and where to go for it, cope with symptoms and side effects, and deal with emotional issues, both your own and other people’s. You may also worry about how you’ll pay for treatment or have other concerns, such as how your cancer will affect your home and work life.
Fortunately, many organizations and hospitals have health care professionals — most often nurses — available to help patients and their loved ones during this challenging time. These professionals may be called by a variety of titles, including:
- Case manager
- Care manager
- Care coordinator
- Patient navigator
The term most commonly used has been case manager. The description below is how the Case Management Society of America (CMSA) defines case manager, but it could also apply to care manager, care coordinator, and patient navigator.
“Case managers help provide an array of services to help individuals and families cope with complicated situations in the most effective way possible, thereby achieving a better quality of life. They help people to identify their goals, needs, and resources. From that assessment, the case manager and the client—whether an individual or a family—together formulate a plan to meet those goals. The case manager helps clients to find resources and facilitates connection with services. Sometimes she or he advocates on behalf of a client to obtain needed services. The case manager also maintains communication with the client to evaluate whether the plan is effective in meeting the client’s goals.”
However, the term case manager can also seem insensitive. After all, you are not a case and probably don’t want to be managed, which is why the term patient navigator is becoming more common.
Regardless of their title, case managers and patient navigators can be a great source of support for patients with cancer. They are usually nurses, but social workers and other professionals sometimes perform this role, either independently or in collaboration with a nurse.
Finding a Cancer Case Manager
A professional “navigator” can be a great help for patients and their families, but finding the right person may require some work. The steps below can help you get started.
- First, some private insurance plans (including some Medicare Advantage plans) may provide access to a case manager as part of your benefits. Call your health plan and ask if there is a case management or care coordination program that gives you access to a case manager or patient navigator to help you during your own or a loved one’s cancer treatment. These services are usually provided by phone.
- Some Medicaid plans also provide case management services. Again, call your plan and ask about case management or care coordination programs. These services are also usually provided by phone.
- If you are a veteran, a member of the active duty military or a family member, some Veterans Administration regional offices offer these services. Contact your local VA office to see.
- Alternatively, ask at the hospital or clinic where you go for treatment, as some of these offer care coordination services. Case managers in these settings will focus on making sure you understand your plan of care, that your care is timely and appropriate, and that your care providers are communicating with each other and with you. They can also assist you in identifying barriers that could prevent you from following your care plan and help remove those barriers. A social worker may also be part of the team. These services may be provided both in person and via phone.
- Employee Assistance Programs (EAPs) are another possible source of patient navigation services (especially for emotional support), or they may be able to help you find these services.
- Finally, some private organizations offer these services on a fee for service basis, and some may provide services free or on a sliding scale. For more information on one such resource, go to www.patientnavigator.com. These services are also usually provided over the phone.
Eliminating Barriers to Cancer Care
Patients may be dealing with a variety of challenges that can make it difficult to follow the plan of care. A case manager or patient navigator can tap into a variety of resources to help patients overcome challenges such as:
- Lack of transportation to and from appointments
- Language barriers
- Limited insurance coverage and financial problems that may make it difficult to take medications as prescribed
- Family responsibilities, such as the need to care for young children, a disabled spouse, or elderly parents
- Difficulty communicating with family and friends about treatment preferences
- Financial difficulties
Other Sources of Support
Even if a professional case manager or patient navigator is not available, you may be able to get assistance from other support services. . The NCCN’s Cancer Resources page lists websites by type of assistance provided or type of cancer. Other sources of assistance include the American Cancer Society (1-800-ACS-2345) and CancerCare. These organizations can provide information about additional resources in your local community.
Whether you are a patient or caregiver, living with cancer can make you feel alone, but many resources are available to support you through your cancer treatment and beyond.