Patient Advocates Are on Your Side
Darla Dernovsek
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.
Speaking for the family
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.
Seeking help
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.
Patient needs will change as treatment advances.
Making informed medical decisions, which may include choosing among treatment options and weighing "quality of life" decisions.
Gaining access to care, which may require working with insurance companies or accessing benefits such as Social Security Disability Insurance.
Navigating employment-related issues, such as talking with employers, maintaining insurance coverage, or securing medical leave.
Finding support, which may be available through existing social networks, such as family, churches, and neighbors, as well as from local organizations or agencies.
Graduate and professional students in law, medicine, pharmacy, nursing, and other fields serve as the center's advocates, teaching these students how to help future clients. Eighty percent of center funding comes from private donations and the center serves about 250 patients a year.
Making decisions
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."
Patients can learn to be effective self-advocates.
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."
Practical steps
Michaud and Langshur say simple steps can help both the patient and the advocate effectively manage medical and financial issues.
Listen. As an advocate, it's essential to listen to the desires of the patient. The advocate can offer information and ask questions, but the patient must retain control.
Remain politely persistent. Persistence is essential to get the information you need from medical professionals, insurance companies, and others involved in the process.
Ask questions. If possible, take someone you like and trust with you to appointments. Michaud says patients and advocates should never walk out of a doctor's office feeling more confused than when they entered. Prepare a written list of questions and ask for more time during the appointment if needed. Nurses from your physician's office may be able to answer questions and provide follow-up information by telephone.
Keep records. Take notes whenever you interact with medical professionals or insurance representatives. Every conversation with an insurance representative should be documented with the date, time, and the insurance representative's name. Ask for written documentation for any decision that relates to insurance coverage. Consider using a three-ring binder or another system to store health and insurance records.
Patient advocates help you handle health challenges.
Make a calendar. In addition to serving as a record of routine appointments, the calendar can indicate when a treatment or medication begins and ends, when side effects may be expected to occur, and when the patient is likely to need time off from work.
Create a community. Communicate regularly with family and friends. Web sites like Care Pages and Caring Bridge can help you keep family and friends up-to-date so you can spend less time on the telephone.
Educate yourself. Use reputable Web sites like Web MD, Revolution Health, or Mayo Clinic to research your condition and get definitions for medical terms. Sites linked to nonprofit organizations like the American Cancer Society also can be helpful. Langshur says many patients use Care Pages to connect with others with the same condition so they can share experiences and discuss treatment options.
Monitor care. The Agency for Healthcare Research and Quality, Rockville, Md., offers a checklist of 20 steps patients can take to improve care. Steps include carefully supervising medication and making sure medical staff wash their hands, even in a hospital or physician's office.
Maintain perspective. The Center for Patient Partnerships recommends that patients spend no more than four hours a day on their disease. Instead, spend time on activities you enjoy.
Multiple advocates can work with the family as a team.
Getting outside help
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."
Keep offering
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."
Published June 16, 2008
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