Last updated April 2020
Choosing the right healthcare provider often can be a life-or-death decision: Our ratings of hospitals and surgeons for high-risk surgeries indicate there are enormous differences in patient outcomes—rates of deaths and complications, lengths of hospital stays, readmission rates—from provider to provider, even after controlling for how sick and frail patients are. And authoritative studies estimate preventable medical errors kill more than 200,000 patients in the U.S. per year—a few studies put that figure at more than 400,000 per year. That’s more deaths than from car accidents and anything else but cancer and heart disease.
It’s important to get the best possible care, but often patients don’t know how to identify the best providers or which hospitals possess the most expertise for their conditions.
And while many hospitals have always been dangerous places for your health, they’re increasingly hazardous to your finances, too. Hospital fees and payment systems are labyrinths for patients; most find it impossible to get advance info on how much it will cost to heal them or a cost comparison for various treatment options, with many systems having become increasingly adversarial toward consumers. Decisions affecting care are often dictated by unseen and unfindable forces, not independent caregivers.
The process of navigating the healthcare system has become so complicated that a fairly new advocacy profession has sprung up. The next time you or a loved one needs extensive medical care, consider hiring a patient advocate or healthcare navigator to guide you through the medical maze.
What Is a Patient Advocate?
“I’m on the side of patients,” says Martine Brousse, a patient advocate who for 20 years was a billing manager “on the other side” for several healthcare providers before opening Los Angeles-based AdvimedPRO in 2013. Her specialty is billing and insurance-related problems, but many advocates focus on obtaining the best medical care for their clients or locating clinical trials.
Skilled medical-billing advocates use their knowledge and noses for nonsense to identify errors and apply little-known consumer protection laws to get them fixed. Their expertise and contacts enable them to get fast results that can reduce your financial exposure and alleviate needless stress.
“Billing advocates can save patients lots of money, if they know what to do and how to do it,” says Brousse. Recently, Brousse says, she eliminated a $10,000 charge to a 19-year-old insured catastrophic stroke victim who had been balance-billed in violation of California law. The hospital also erroneously filed the rest of the same patient’s claim with the wrong insurance company, then billed him $112,000 after the claim was denied. Brousse says she straightened it out, and the correct insurer paid up.
A good advocate knows how the system works: how medical procedures should get translated into correct diagnostic and billing codes—and how they often get mistranslated. They understand how those codes translate again into claim payment approval or rejection, according to myriad fine print in health insurance policies. And they’re savvy about how state and federal laws, loopholes, gaps, court decisions, and yet more layers of regulatory interpretation can either protect consumers or confound common sense.
Other advocates focus on coordinating patient care. Some help their clients locate clinical trials for cutting-edge medical treatments. They’re aware of what kinds of investigations are going on and who’s doing them, and they know how to get you into an evaluation for a particular trial that is appropriate to your disease and prognosis.
Still others coordinate more routine healthcare procedures outside the U.S., in East Asia, India, and Western Europe. To save on costs, more and more employers and insurance companies are cobbling together “medical tourism” packages that include travel accommodations, the medical procedure, and follow-up care back in the U.S. for patients who agree to go abroad.
Let’s Make a Deal
Surprise medical bills are getting a lot of attention these days. They can mug you for tens of thousands of dollars for treatment, even if you selected doctors and/or a hospital that participate in your insurance network. A common type of gotcha: The anesthesiologist you were assigned was out of network, so you get the joy of paying for nearly all that part of your care.
Advocates also negotiate fair prices. Hospitals, imaging centers, specialists, and other healthcare providers typically hide their prices from consumers because they charge different rates to different patients, depending on their insurance and ability to pay. Often, middle- and upper-income patients with private insurance pay a lot more than those covered by Medicare and Medicaid or who lack insurance.
“The truth of the matter is you have to look at the Medicare rate, which is the middle-of-the-road price for every possible procedure,” says Adria Goldman Gross, president and founder of MedWise Insurance Advocacy in Monroe, N.Y., and co-author of Solved! Curing Your Medical Insurance Problems.
“Depending on the company, a good employer health plan pays three to 10 times the Medicare rate. But many doctors will say, ‘If you’re not covered, we’ll charge you only the Medicare rate itself,’” says Gross. That’s the benchmark “reasonable and customary rate” you hear bandied about by health insurers.
Gross uses Medicare’s diagnostic and procedure billing codes for everything listed on the bill to find the Medicare rate, based on the provider’s geographic location and specifics about the kind and severity of the medical condition being treated. “I move them toward the Medicare rate,” she says.
For example, the Medicare rate for a CT scan with the procedure code 74176 and subject to the Outpatient Prospective Payment System (OPPS) caps, ranges in many areas from $219 to $251. Why should you pay $657 to $2,510?
Help Finding the Right Providers
Some advocates act as healthcare navigators, helping their clients find the right hospitals, specialists, and choices for their conditions. “A healthcare navigator eliminates a lot of the stress and administrative burden of dealing with a serious illness,” says Elisabeth Schuler, a pioneer in patient advocacy who started learning the ropes in 1998, when her two-year-old daughter was diagnosed with an inoperable brainstem tumor.
Schuler, a State Department employee at the time, successfully found her way through the pre-Google uncharted world of this complicated disease, and her daughter, 23, is now a pediatric nurse at Johns Hopkins Medical Center. That experience prompted Schuler to found her Patient Navigator service in the Washington, D.C. area. She’s now working with one pancreatic cancer patient to find clinical trials after the patient’s third round of chemotherapy. “She offloads all the logistics to me. I write the emails, I collect the medical records, I talk to the doctors and take notes,” says Schuler.
Advocates also watch for important things that can fall between the cracks. Sandy Thigpen is a board-certified patient advocate who founded Personal Senior Advocates in Huntington Beach, Calif. When one of her clients, a patient with leukemia, was being discharged, Thigpen says she noticed that a suction device being used frequently in his hospital room to prevent aspiration of saliva was not included in the discharge orders.
When Thigpen learned the device was erroneously considered a “convenience item,” which insurance wouldn’t cover, she knew she had to press the discharge planner to properly establish its medical necessity. She pointed to the patient’s history of potentially fatal aspiration pneumonia to prove the device was needed to help prevent that. The discharge order was corrected, a home suction unit was approved by the insurance company, and an avoidable complication was averted. “If the family didn’t know he could get this device for home use, they wouldn’t know to ask why it wasn’t in the discharge orders,” says Thigpen.
Insisting on Thorough Care
Many advocates focus on making sure their clients safely get through their transitions of care. Until the 1980s, patients stayed in the hospital until they were completely well. Today, because the system is intent on lowering costs, many are discharged “quicker and sicker.”
“Your hospital stay is based on the level of acuity. Once your acuity level no longer requires a hospital setting and you’re stable, you are transitioned to a lower level of care to complete your recovery,” says Thigpen. The next level down is often a skilled nursing facility (SNF), where patients receive help getting back on their feet from nurses and therapists, but don’t have daily visits from a physician. “The goal for the SNF is to get the patient to a point in their recovery that their care can be managed at home,” says Thigpen.
Whether the hospital bars the door to inpatient entry or hustles you out quickly, it has a responsibility to properly evaluate you and take—or keep—you in if it’s medically necessary. Unfortunately, all the rushing can cause them to miss things that a proper evaluation can catch. For example, seniors commonly suffer cognitive decline, which can cause them to be confused or lack insight about the extent of their illnesses or how badly they need hospitalization; they may simply state, “Oh, I’m fine.” An advocate knows to inform and push hospital staff to take into account the senior’s medical history, medications (and possible side effects), risks of the home setting (such as stairs, lethargic pets, or rat-packing clutter to trip over), and their living alone or with a spouse who’s too frail to provide necessary home care.
Similarly, like a good lawyer who loses in the trial court, advocates can appeal hospital and insurance decisions. For example, they might ask for a review if your insurer denies tests, treatments, or procedures, or tries to switch you to a less effective medication.
A lesser-known problem can snare folks covered by Medicare: More and more, hospitals are treating inpatients as outpatients, which denies the patients thousands of dollars in Medicare coverage for procedures such as follow-up medically indicated rehab when the hospital discharges them to an SNF.
Often navigators are called in during emergencies. For example, Barbara Abruzzo, RN, founder and president of Livingwell Care Navigation, based in New York City, explains how she sprang into action after she got a call last year from a woman whose husband had suffered severe multiple head and body trauma in a serious motorcycle crash and had wound up in a hospital with a poor reputation for patient safety. He was not getting proper care, and she had to bribe nurses to give her husband any care, Abruzzo says.
The hospital wanted to move him out of the surgical ICU due to lack of beds. “It was ridiculous. His injuries were too severe,” says Abruzzo. He had traumatic brain injury, his skin grafts were not healing, and his past addiction issues made pain management highly problematic, she recalls.
“The care was so poor, he was dying there,” says Abruzzo.
Within four hours, Abruzzo secured admission for the patient into the burn unit of a top area trauma center, where he received expert, safe care. After three weeks, the hospital said the patient’s condition had improved enough for him to be discharged home. But Abruzzo called a family meeting to reassess the situation with the physicians in charge of the burn unit and surgical ICU, the doctor in charge of pain management, the occupational and physical therapists, and others.
Abruzzo’s previous 20-year career as a medical decision support specialist and critical care nurse in a hospital intensive care unit gave her the expertise and gravitas that the doctors respected, but which most patients and families lack. As a medical professional herself, “I have reverent power,” says Abruzzo.
That team decided to keep the patient in hospital for two more weeks, before discharging him to short-term rehab for another two weeks, she says. That gave the man’s wife time to convert a first-floor den in their house into a bedroom and make a downstairs half-bath a handicap-accessible full bathroom, as he could not climb stairs.
“We’ve gotten people from ER to inpatient admission,” says Connie McKenzie, director of Firstat RN Care Management Services in West Palm Beach, Fla., and president of the Aging Life Care Association of advocates. A good advocate can also delay discharge a day or two if you are an inpatient but have only been there for two midnights and therefore won’t qualify for Medicare coverage of SNF care.
“Paint the picture,” says McKenzie. “Why did she fall? Have her head and cardiac been properly evaluated? Was she properly hydrated? Does her instability need to be evaluated to ensure her physical ability to walk safely?” The advocate’s list of concerns is not merely aimed at running out the clock; it also promotes legitimate justification for properly examining why the person wound up in the ER in the first place, and why continuing inpatient hospital treatment may be medically necessary.
And the legal gobbledygook of a disclosure notice can be easily lost on an incapacitated elderly patient. That’s why an advocate can be valuable. “Being in a hospital is like being dropped into a foreign country. You don’t speak the language. You don’t know your way around. You don’t know how to get what you need,” says Thigpen.
An Advocate for Mom
Demand for advocates is especially rising among adult children of aging parents. Many live too far away to help mom or dad manage their routine healthcare, chronic conditions, appointments, and bills, whether they’re aging in place or in a senior living community.
“Once a neurocognitive problem is diagnosed, it’s going to progress, and you need a plan,” says McKenzie. Advocates who specialize in geriatric care can help develop that plan and find an assisted living facility, long-term custodial care nursing home, or memory care unit. (Medicare does not cover this type of long-term care; it covers only the first 100 days of qualified care in a skilled nursing facility.)
These geriatric care managers charge clients and their families fees for this service. This removes the potential conflicts of interest that senior living placement agents such as A Place for Mom and Caring.com have. Those companies collect big commissions or referral fees from assisted living communities where they place their customers. Such brokers consider only residences that pay out commissions, usually a few thousand dollars, or 50 to 120 percent of the first month’s rent and care.
And sometimes an advocate can help protect seniors from their own exploitative family. While Mary Daniel, a board-certified patient advocate and owner of ClaimMedic, in Jacksonville, Fla., was visiting a family member at a nursing home memory care center, a patient approached her and asked for help. About a year earlier, the 54-year-old man had survived a heart attack with some brain damage, Daniel remembers, and his sister put him into memory care, which was covered by his long-term care insurance. Then she got power of attorney, began spending his money, ordered the nursing home to put him on lockdown—he couldn’t leave or talk to anyone but her—and didn’t visit him herself for over a year, says Daniel. In the meantime, the man recovered, but he couldn’t figure out how to prove his competency.
Daniel says she was so moved by the situation that she worked pro bono to arrange for an updated neuropsychological evaluation—which proved him competent—got the sister’s power of attorney revoked, and sprung him from the home.
How Much Will You Pay for Their Help?
Fees range from $90 an hour in rural areas to $200+ per hour in big cities, says McKenzie of the 2,000-member Aging Life Care Association. Insurance doesn’t cover these fees, so while the cost is your out-of-pocket expense, some advocates told us they try to find ways to make it affordable for all clients.
Is a professional advocate worth the money? If an advocate can efficiently and significantly reduce or eliminate a four-, five-, or six-figure bill that you shouldn’t pay, a fee of a few hundred or even a few thousand dollars is well worth it.
Yes, you can be your own advocate. But a good advocate brings expertise, skills, and contacts you probably lack. An advocate also likely supplies more fortitude and a cooler head, since they aren’t personally and emotionally shaken by the medical issues you or your loved one is facing.
“A highly skilled registered nurse can anticipate what problems are possible and are even likely to develop, whereas a lay person without much or any experience in the medical field won’t know something is going wrong until it does go wrong. That’s not good,” says Abruzzo.
How to Find an Advocate
Because patient advocacy is a relatively new field, there’s a somewhat limited supply of them—maybe several thousand practitioners around the U.S. Standards of ethics, codes of conduct, and best practices are limited, too, but professional groups impose such requirements and a board certification was established in 2018. So it may not be easy to find a good one nearby, and you’ll need to rely on your own research and gut instincts to size up candidates and their credentials. Some guidelines:
- Start with free resources. Many hospitals provide on-staff patient advocates, which may help cut through red tape and straighten out routine administrative mix-ups. But since the hospital pays their salary, in-house advocates may be reluctant to seriously challenge orders from administrators—and they likely won’t help you research specialists or care at a different hospital. Nursing homes, assisted living facilities, and other senior living residences are subject to oversight by independent government ombudsmen; this is where you should bring complaints and concerns about neglect or abuse of residents. Senior residences also may have family councils, led by volunteers, which might be able to help with some issues.
- If the free resources aren’t much help, and you or your family are having no luck fixing the problem on your own, you may need a paid professional advocate. The directories of these organizations will help you identify some candidates:
- Look for an advocate who specializes in your problem area or need: Medical billing madness? Help getting the best treatment for a complex disease with confusing options? Finding and getting admitted into a good skilled nursing facility—or getting out of a bad one?
- Interview the advocate and get references. If billing problems are the issue, look for someone with experience in the specialty, such as having worked with health insurers either for a provider or insurance company. Assertiveness and good communication skills are musts. Most of all, look for a passionate but level-headed fighter.
- Ideally, you should find and retain an advocate before you actually need one, maybe when you or your aging parents approach retirement age or begin experiencing significant medical problems. But most consumers don’t plan like that, so the next-best time to search is sooner rather than later after billing problems arise, you get a major disease diagnosis and you’re confused or unsure about what to do next, or you’re already in a hospital and not getting the answers or action you need.