When illness or injury stresses your system—physically, emotionally, or financially—it's a good time to request help from someone committed to looking out for your best interests.
Experts say "patient advocates" can be invaluable in helping you or your family handle the challenges that accompany a major health event.
Patient advocates may be paid or unpaid, professionals or volunteers, experts in health care, or merely experts in understanding your needs. The common element that earns the "advocate" title is the ability to work on your behalf.
Dr. Sharon Langshur, a pediatrician with master's degrees in patient advocacy and human genetics, says patients may need an advocate's help because of illness, energy levels, or the emotions around the illness or injury. Langshur co-founded Care Pages with her husband, Eric, to connect people who are coping with health challenges.
"When something prevents the patient from being an advocate for themselves, the caregiver steps in to help," Langshur says.
The patient advocate may help the patient obtain information and make decisions related to medical treatment, medications, insurance, and other financial issues. Dealing with a complex and sometimes "paternalistic" health-care system can make these decisions difficult without an advocate's assistance, Langshur says.
Patient advocates help the patient work through these issues by asking questions and doing research. They also can take practical steps to organize paperwork, keep a calendar of appointments, and make arrangements for care when outside help is needed.
Patients who seek help from patient advocates at the Center for Patient Partnerships at the University of Wisconsin–Madison typically are coping with four broad types of issues, according to Mary Michaud, the organization's policy director.
The Center for Patient Partnerships is the only program of its type in the country, although other universities are considering offering similar clinical training.
While advocates are available for hire in some communities, many patients rely on friends or family members for unpaid assistance. Michaud says it's important for patients to have someone they can trust to help evaluate decisions and coordinate care.
"Having more than one advocate working with the patient in a team is often an effective approach," Michaud says. "Primary caregivers—parents, [adult children], spouses, or life partners—often need respite."
Michaud suggests that patients think about dividing tasks among a neighbor, friend, fellow church member, or adult son or daughter "who can stay calm and help you see the forest from the trees."
As you begin making choices, your advocate can help clarify options regarding treatment, employment, or insurance. When possible, resist the medical profession's tendency to urge patients to proceed quickly. Michaud notes that in some cases, waiting may have minimal impact on your condition.
"You can stand your ground and ask for more time as you make tough decisions," Michaud says.
When making employment decisions, look for options that preserve insurance coverage and make it possible to get the most income from short-term disability policies, which may be offered as an employee benefit.
"People sometimes wait too long before asking for short-term disability coverage," Michaud says. "Many people don't even know they have disability coverage, and then it's too late to use it."
Some hospitals offer patient advocates who help resolve specific problems within the hospital setting. Nonprofit organizations also may offer peer advocates who provide advice or share information about their experiences.
Some employers offer counseling through employee assistance program (EAP) services. Another benefit some employers offer is access to an expert in dealing with health-care issues.
In many parts of the country, "professional" advocates now are available for hire. Since there are no national standards and few training programs, the backgrounds and specialties of these advocates can vary considerably. Some paid advocates focus on dealing with financial issues and insurance, while others concentrate on medical treatment. Always check an advocate's background, references, and fees before making a decision.
While paid advocates can be helpful, Michaud says an advocate always should strive to help the patient learn to become an effective self-advocate.
"Quite often, people who come to us confused or frustrated find they can handle things effectively with just one or two tips and encouragement," Michaud says. "People are resourceful and resilient."
When you're in a position to serve as an advocate for a family member or friend, remember that patients are likely to need different levels of help at different treatment stages. Langshur says the patient who simply needs to talk after learning a diagnosis may later need hands-on help when undergoing chemotherapy or recovering from surgery.
"Their need is going to change as treatment advances," Langshur says. "Listening to people and continuing to assess the situation on a long-term basis makes a difference."
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