Jeralyn Felts, 72, has faced a succession of medical scares in recent years. She wrestles with chronic diseases and has repeatedly endured adverse physical reactions and side effects to medications.
But it goes deeper. Her frustration with doctors has made her feel powerless and her voice unheard when it comes to her health care.
Her solution: She hired Dr. Annette Ticoras, a patient advocate and licensed physician, based in Columbus, Ohio, to go with her to appointments and be a “second set of ears,” said Felts.
Ticoras represents a growing profession of patient advocates (or patient navigators) who help Americans who are aging alone navigate a complex and often stressful medical system.
What does a patient advocate do?
A health care or patient advocate is in charge of helping patients steer through the multifaceted medical system and may offer a broad set of home-based recovery and wellness support services.
They might offer guidance in making medical decisions, help locate a specialist or hospital, go with patients to doctor appointments to take notes and ask questions, manage multiple-doctor care, discuss treatment options, and keep track of prescriptions. They may even help get to the bottom of billing mistakes and challenge insurance-coverage denials.
Just as the work of an advocate varies, so does the way they enter the field. Many, however, are medical-trained professionals. Some are nurses and social workers. Others are doctors such as Ticoras, who specializes in general internal medicine.
Who needs a patient advocate?
“If you have a capable family member or friend who knows how to communicate with doctors, who understands medical stuff, and can have an effective conversation, you wouldn’t need a patient advocate,” Felts said.
But more Americans are becoming solo agers; they are living by themselves without family nearby to help with medical issues.
Felts has 3 grown children, none of the whom live near her in Ohio. She also has a wife/spouse. However, collectively, none are able to help her when she's feeling overwhelmed by the complexity of various medical options.
“If I go to a specialist, Annette goes with me,” Felts said. “I have a lot of drug sensitivity. When you read that one percent of the population will have these side effects, that’s me. It is difficult for me to get doctors to understand that. As I have aged, I find that it is even more difficult to get people to listen. If Annette goes with me, and explains it to the doctor, that helps.”
For Felts, Ticoras is the designated point person with medical professionals—even in emergency room situations. “She understands my particular situation,” Felts said. “And it’s not always the doctor, sometimes it is me who needs to listen. If she says in a kind, but firm tone, ‘this is something you need to pay attention to,’ I interpret it as 'don’t argue, sit down, shut up and do what you’re told.’ I say yes ma’am. That’s the bottom line. I totally trust her.”
Ticoras also commands professional respect and validity from health care providers which is priceless for Felts. “Sometimes it’s really hard to get a doctor to make eye contact these days because they are so busy typing notes or reading things,” Felts said. “As my advocate and an MD, she can provide the doctor with counsel in terms of saying ‘This is an experience this person has had and that needs to be a factor.’”
That said, when it comes to managing your health care estate planning documents, a patient advocate should not be confused with someone named as your health care proxy, which legally grants authority to another person to make medical decisions on a person's behalf when that person is not able to communicate decisions on their own.
“That’s a conflict of interest,” said Ticoras. “They can’t be paying you to guide them in their medical care, and be their proxy.”
What don’t patient advocates do?
As Felts’ advocate, Ticoras does not make the medical decisions, prescribe, or diagnose. She guides. “She doesn’t say ‘Don’t take the drug,’” Felts said. “She says ‘It might have more risk for you than it does for others. You might want to investigate more thoroughly.’”
A patient advocate can work as part of your overall team of estate planning and health professionals. “You often hear from solo agers that they don't want to burden a distant nephew or friend with a lot of this day-to-day health management,” said Kerry Beeber, vice president, advanced planning at Fidelity. “By planning around this and getting local resources in place, they are eliminating a lot of that burden.”
A few patient advocacy tips for solo agers
How much do patient advocates cost?
Patient advocates can be expensive, and the services are generally not covered by health insurance plans or Medicare. Fees can range between $125 to $400 an hour. Ticoras, for example, requires an upfront 4-hour retainer from her clients and bills hourly for a variety of services which might include accompanying clients on doctor visits, medical consultations, reviewing medical records, or researching a new clinical trial or treatment that might be suitable.
Why consider hiring a patient navigator?
“The biggest part of what I do is to act as a translator for someone either in person or virtually,” Ticoras said. “A solo ager is taking in all that information for themselves and having to make those decisions by themselves, which is a very uncomfortable place for anyone to be.”
“They generally don’t have children, or siblings, who can go along with them,” she said. “When something happens, they have to face it alone and make their way through decision-making trees,” Ticoras added. “You can do this, or you can do that. It can be an overwhelming volume of information. In the end, I don't make those decisions, but they utilize me as a consultant to provide a sounding board. ‘Did he really say that? I did not hear that. Is that what he meant? That’s not what I understood.’”
The patient advocate can also relieve anxiety. “When a very intimate conversation starts with a doctor, someone can feel vulnerable,” Ticoras said. “Just being able to be there can make them feel they’re not alone. My job is to make sure my client is comfortable and gets the best and most optimized health care.”
To learn more about patient advocates, check out Greater National Advocates, the Alliance of Professional Health Advocates, the National Association of Health Care Advocacy, and the Patient Advocate Certification Board.