Patient advocates offer moral and practical support

TAMPA

When Arlene Baker goes to her monthly chemotherapy appointments at Tampa General Hospital, she brings along an extra pair of eyes and ears, a friend who helps her in her journey through a second bout of ovarian cancer.

The friend is someone the medical community often refers to as a patient advocate. Their roles are varied and, to patients like Baker, vital.

Some advocates emerge naturally from family and friends. They provide companionship and simple comforts — refill a coffee cup, get a blanket, keep the conversation going. They may also help keep track of information presented by doctors and nurses.

Patient advocates also can be specially trained professionals who do research, offer advice, locate medical specialists, and generally guide patients and their families through treatment, insurance issues and decisionmaking.

Baker's friend and advocate, Margaret Mikkelsen, is someone she laughs with, prays with and enjoys spending time with, even beyond chemotherapy appointments.

The two met three years ago in a Bible study group and soon discovered much in common. Both are former nurses. Both were born in Canada and now live in Tampa. Both are devout Catholics. They became fast friends. When Baker, 66, learned her cancer was back, she turned to Mikkelsen for support.

"Everyone in my family works," Baker said. "It would be hard for them to go with me to appointments."

Mikkelsen, 63, now retired from nursing, says it's not a tough job to accompany Baker to chemo. They have so much fun, in fact, Baker said, that nurses sometimes ask them to pipe down.

But anxiety creeps up on Baker every time the nurses prepare her for the infusion of cancer-fighting medication. Her heart races; she can feel her blood pressure rise. Mikkelsen helps restore calm. And later, when they meet with the doctor, Mikkelsen is right there, paying attention, helping Baker to listen and retain the details.

"I forget things with the chemo," Baker said. "She helps me remember."

This is familiar ground for Mikkelsen. Her husband died in 2003 after a yearlong battle with esophageal cancer. She knows firsthand how important it is to have the extra presence.

Maureen Beauregard, nurse manager of the oncology unit at Tampa General, says having an advocate can be invaluable to patients and the medical staff. The ever-changing faces of caregivers, medications that interfere with comprehension and the volume of information presented can leave patients overwhelmed.

An advocate, she said, "can reinforce and remember what was said, what might be blocked out by the patient."

Patient advocacy becoming a profession

Laura Weil, director of the Health Advocacy Program at Sarah Lawrence College in Bronxville, N.Y., said people who don't have a family member or friend to serve as an advocate are increasingly seeking out specially trained professionals.

They may work behind the scenes for patients as researchers or advisers, or accompany patients to medical appointments and ask questions only a health care professional might think of.

Weil says the field of health care advocacy is attracting many people in their 40s, 50s and 60s looking to change careers. Graduates of the Sarah Lawrence College program work as patient advocates in hospitals, nursing homes, government agencies, nonprofit organizations and in private practice. She says professional advocates bring special knowledge to the table.

"You want an advocate who understands the health care culture, the language, how it's reimbursed," she said.

Weil said advocates can help patients make the most of short meetings with medical personnel by preparing questions and concerns to address and making sure they are resolved or at least discussed. "The idea is not to take over the interaction. The advocate is there to assist and facilitate the flow of information," Weil said.

Because privacy and confidentiality must be maintained, Weil says the patient should have a private discussion with key members of the health care team, giving them permission to discuss medical information in front of the advocate. The private discussion is necessary, Weil says, to assure the staff it is indeed the patient's choice to have this person participate in their care.

Who should be your advocate?

Many times the role falls to a family member. But Weil says that might not be your best choice.

"It's important to choose someone who can be assertive without being antagonistic . . . You want a coalition builder, not someone who is going to be a divisive force when you want your health care team to be on your side," she said.

For Arlene Baker, an advocate who is a close friend works perfectly. The nurses on Tampa General's oncology floor say the presence of advocates like Mikkelsen can make treatment easier, help promote healing, and sometimes they can even be an answer to prayer. Baker says Mikkelsen certainly was.

"I call her my gift from God."