Who’s in Your Corner?

Patients need advocates to guide them through the health care labyrinth.

Photo by Susan Q. Yin

If you’ve ever dealt with a major medical emergency, you know that getting the best care and making the best decisions is confusing at best, frustrating and maddening at worst. I watched a friend battle for months with doctors, nurses, aides, and an insurance company on behalf of her ailing partner. She had to fight to receive accurate and complete information and fight to be heard when she transmitted important information. As her partner’s advocate, she had to sort through conflicting information on the journey from hospital to rehab to home and back again.

My wife and I had a similar experience about 20 years ago, when we were trying to help an elderly relative who could no longer live alone in her apartment. Fortunately, we found help navigating our way through the morass. Through word-of-mouth referrals, we connected with a former nurse who had started a private practice helping clients find appropriate senior living facilities. Her medical background and her knowledge of the market were a tremendous help.

Most patients and their families who are not health care system insiders can benefit by having a guide who can cut through the jargon and double talk to give them straight answers about their choices. With that thought in mind, I started researching the field of patient advocacy. What I didn’t expect to find was that the patient advocacy field is almost as confusing as health care itself.

An Avalanche of Advocates

Back when we were helping our aging relative two decades ago, the person we found seemed to have the field all to herself. Since then, the patient advocacy field has exploded.  So many “advocates” have hung out their shingles that it’s hard to tell who is pursuing the patient’s best interests and who has other agendas.

Many hospitals, for example, have “patient advocates” on staff, but don’t expect them to look at the big picture. Their job is merely to process you for discharge, making sure you have all the right meds and equipment for your recuperation somewhere else.

There are also “Navigators,” a job created by the Affordable Care Act to help consumers enroll in coverage through the health insurance exchange and refer or assist with Medicaid enrollment. Their role, too, is limited.

Online you will find “senior living advisors” (A Place for Mom, for example) that help you select an appropriate facility for you or your loved one. Their service is free to patients – which may be attractive – but that’s because they earn commissions from the facilities that accept you.  

There are Medicare brokers (such as my friend Nancy Schwartz) who can clearly explain your supplemental coverage options and make suggestions about appropriate insurance plans. Their service is also free and may well be objective, but keep in mind that they are paid commissions by the insurance companies they broker.

So who can you trust?

Holistic and Client-Centered

Based on my preliminary search, it seems the only way to guarantee an objective, unbiased advocate who puts your interests first is to pay for it yourself. The advocate could be your geriatrician, should you be fortunate enough to have one. More likely, it will be a professional Aging Life Care ™ manager.

Professionals who apply that trademarked label to themselves are members of the Aging Life Care Association and have committed to follow its Standards of Practice and Code of Ethics. They describe their work as “a holistic, client-centered approach to caring for older adults or others facing ongoing health challenges.” You can locate ALC managers by zip code on the association website.

In the Baltimore region where I live, for example, the site reveals 25 ALC practitioners within 25 miles of my zip code. Among them is Mary Faith Ferretto, founder of Ferretto Eldercare Consulting. “We guide people through as their health care changes,” she explains, “from hospital to sub-acute care, or to an assisted living facility, or even just to downsize. We offer a wide continuum of services.” Those include creating a plan, managing and preventing crises, addressing memory loss, recommending care options, planning to age-in-place, connecting with local resources, handling paperwork, and providing emotional and family support. “If you don’t have an advocate, it’s hard to make the best decisions.”

“Because we’re private,” she adds, “we have more time [than hospital-based patient advocates] to spend with clients. We offer as little or as much as people need.” She also notes that her practitioners are all clinicians.

The U.S. health care system is likely to remain a bewildering labyrinth for the foreseeable future. You’re likely to have better outcomes with the help of a professional advocate to guide you through the maze. Just be sure to choose an advocate who will work only in your best interests.