A Patient Advocate Shares Her Best Advice for Caregivers

We all know that patient advocates focus on patients’ care. But if you’re a caregiver who needs assistance, a medical advocate can help you too, with everything from driving your loved one to doctors’ visits to helping you navigate health insurance.

Gina Hannah

Gina Hannah is a patient advocate, part of a growing industry of laypeople dedicated to helping meet patients’ needs. Traditionally that’s a role that’s been reserved for family and friends, but in growing numbers, companies, hospitals and patients’ families are hiring medical advocates to simplify the lives of the patients – and the caregivers, as well.

“All of the different aspects of caregiving can be overwhelming, both physically and emotionally,” says Hannah. “One minute you’re helping your loved one get a bath, the next you’re arguing with an insurance company or trying to fill out disability paperwork. It’s incredibly stressful.”

How a Patient Advocate Can Help

Advocates’ roles differ. One might sit with a patient at the hospital to make sure they are properly cared for, accompany patients to the doctor’s office to ask questions and take notes, or help the patient and pharmacist review medications and supplements to ensure there are no contraindications.

Others help with billing, by intervening with insurance companies, or – as Hannah has done with clients – by researching a diagnosis and treatment options for a patient. They can also work with physicians, helping make sure the patient is compliant with medications and other therapies.

A patient advocate can lighten the caregiver’s load, by serving as an assistant, helping with the tasks that don’t involve direct care, coordinating doctor’s appointments, and helping both the patient and caregiver find resources that make their lives easier.

When it comes to two of the most frustrating and complex aspects of caregiving, insurance and billing, patient advocates can effectively cut through the tape because they’re a detached party.  Hannah say,. “It’s easy as a loved one to get upset, which can make it difficult to be persistently assertive.”

What About Costs?

Patient advocates are paid in a variety of ways, from hourly rates ($25-$100/hour, says Hannah) to taking a percentage of savings, as when renegotiating a hospital bill. Some organizations like Patient Advocates help companies set up medical advocacy as part of their benefits packages.

For those on limited budgets, Hannah suggests checking with local nonprofit agencies, senior centers, and your town’s chapter dedicated to the patient’s condition. Many have volunteers who can take patients to appointments, run errands or sit with the patient while the caregiver takes a break.

The Patient Advocate Foundation has an app called My Resource Search that helps patients and caregivers identify the local organizations that can help with their healthcare needs. Healthfinder.gov also lists groups that are geared toward helping patients.

When the Caregiver is the Advocate

What happens when you’re both the caregiver and advocate?

“Take a deep breath,” Hannah says. “It can get so overwhelming that you don’t know what to do next.”

To help, ask yourself: What’s the next step? What does the patient need? “So often,” she says, “I’ve found that patients don’t get the care they need because no one asked. Being assertive isn’t being aggressive.”

If you’re told no, ask again. Call back and talk with another person or call local social service agencies and ask them which organizations can help in your particular case.

And knowing you’re not alone helps, too. Hannah recommends the book Always on Call: When Illness Turns Families into Caregivers, which shares caregivers’ personal stories as well as in-depth analysis of the changes in the health care industry. Revealing the hidden struggles of the more than 65 million caregivers in America is a vital part of moving forward, especially in the rapidly changing healthcare climate.

People like Hannah, who was a journalist before becoming an advocate, are in the job because they care about helping people. What does she likes best about the role? “The most satisfying thing,” she says, “is knowing that I made a difference.”

If you are struggling to find ways to be supportive to a friend or family member with chronic pain, check out our Caregivers Toolbox. And if you’re having difficulties communicating, learn how to reduce caregiver stress by improving communication.

Have you been helped by an advocate? If so, please share your experience.