An “advocate” is a person who understands and takes ownership and responsibility for the needs of the patient and actively seeks responses to those needs, whether in the form of information or action. Advocates can be other patients, family members, friends or social workers and are critical in accessing information to help:
- Understand the diagnosis and treatment options
- Cope with the diagnosis
- Consider decisions about treatment options as they affect work, family and other factors
- Understand and access social security, disability and other benefits and insurance coverage
- Help apply for programs that offer financial and other assistance
Today, many patients are serving as advocates for their own health care, which includes discussing with their oncologist his or her recommendations for treatment. Although many people choose to follow these recommendations, they are not required to do so. Indeed, any adult who is able to make his or her own decisions has the right to choose which course of action to take. The key to being your own advocate is asking for what you need, and trusting that you have the right to do so.
Where can you find knowledgeable people to help be your advocate?
Let’s start with a patient receiving care at a hospital. Usually a hospital will have a Social Services department. If it’s a small hospital, it may only have one social worker. Social workers often serve as case managers, and patients and family members can request contact with the social worker. If the hospital social worker is unable to provide case management services, he or she is usually familiar with local resources in the surrounding community. If no social worker is available, patients have several options. First, health insurance companies may offer patient advocacy programs, where nurses and/or social workers are available for telephone consultations at no cost. In fact, certain diagnoses merit the assigning of a case manager. If a patient hasn’t yet received contact from a hospital case manager, he or she should contact the insurer and ask about these services. Also, remember to ask your insurer for a written explanation of benefits, which outlines the types of services covered under your plan.
Additionally, most of the private health care insurance in America today is provided through employers, and many companies have instituted Employee
Assistance Programs (EAP) to help guide employees through various aspects of their health care. Check with your employer’s human resource department about whether they offer an EAP or similar program. Finally, patients can make use of the many community resources that are available and free of charge, such as CancerCare and the Patient Advocacy Foundation (PAF). The PAF is a national non-profit organization that helps patients through effective mediation that assures access to care, maintenance of employment and preservation of financial stability.
Case Managers are available to assist patients in accessing legal resources, managed care consultants, and national financial resources regarding denial of insurance coverage, employment discrimination, public assistance programs, and related issues.
PAF provides professional case management services to Americans with chronic, life threatening and debilitating illnesses. PAF case managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis also assisted by doctors and healthcare attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
The American Cancer Society is the nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service.
CancerCare provides free, professional support services to individuals, families, caregivers, and the bereaved to help them better cope with and manage the emotional and practical challenges arising from cancer.