Until McAfee hired a patient advocate, nobody was in control. “Doctors just kept piling on the meds,” she says.
McAfee contacted Mary Aimé-Juedes, a patient advocate with RN Patient Advocates of Scottsdale, Ariz. Aimé-Juedes used a computer program to check the 50 medications McAfee’s sister was taking. Many of them, Aimé-Juedes discovered, were causing adverse reactions. After talking to seven doctors, she was able to have the medications cut by one-third.
“It was worth it to me to get to the bottom of [the] mess,” McAfee says. Sadly, however, the medical problems were ultimately too severe, and McAfee’s sister passed away.A patient advocate also can help families who face nerve-racking decisions. As the health of Barbara Porter’s father started to decline, Dianne Savastano, founder of Healthassist, based in Manchester-by-the-Sea, Mass., helped smooth communication among her father’s health care team, which included family in other parts of the country. “Dianne helped us every step of the way with decisions and getting everybody onboard,” Porter says.
Patient advocates can help their clients realize they may have more options than their doctors suggest. When Marshall Krantz learned he had a nodule on his lung, his doctor presumed it was cancerous and urged him to get it removed quickly.
But Smith, his health care advocate, told him he didn’t need to rush into surgery and could get a second opinion. “Patient advocates broaden out your thinking,” Krantz says.
After an operation, Krantz learned from nurses that he would have to manage the scheduling and dosage of two pain-killers. He was in no shape to do that, however, so Smith intervened and worked out a regimen with the nurses. “She could speak their language and translate for us,” Krantz says.
For Gail Wais, the presence of Aimé-Juedes, her patient advocate, means that doctors are more willing to look over her complicated medical history and share their thoughts.
“They stand at attention while she’s there,” says Wais, whose swollen face has puzzled doctors. Aimé-Juedes knows Wais’ history well enough that she may say to the doctor, “That’s been tried. What can you bring to the table that we haven’t seen yet?”
Patient advocates help empower their clients to become more savvy health care consumers. When Susan Kaplovitz was told about a type of brain surgery that would reduce the symptoms of Parkinson’s disease, she and Savastano researched opportunities for the procedure in her area. Savastano encouraged Kaplovitz to pay attention to her comfort level with each team and not to devalue intangibles, like a warm personality. Newly empowered, Kaplovitz realized she sought both competence and accessibility, which made it easy to whittle the list to three doctors.
After peppering teams at the medical centers with questions, Kaplovitz ultimately chose an institution that offered the best aftercare, including an on-site support group, access to a physical therapy program for Parkinson’s patients and specialized nutrition counseling. By the time of her surgery, “I was no longer afraid,” Kaplovitz says. “I knew enough.”