The process of navigating the health-care system has become so complicated that a fairly new advocacy profession has sprung up. Patient advocates are hired guns who protect your health-care interests when you’re knocked down by accident, illness or increasing infirmity.
With the novel coronavirus, many families need help more than ever. If a loved one is isolated in a hospital with covid-19, the disease caused by the coronavirus, or locked down in a senior community, don’t assume that there’s nothing you can do to make sure they get the best possible care, says Barbara Abruzzo, a registered nurse and patient advocate who runs Livingwell Care Navigation in New York City. Instead, families should seize some control:
●Establish communications links to get information about the patient’s condition, complications, progress and prognosis. This requires a health-care proxy. Without that, unless you’re the patient’s legal spouse or parent, nurses and doctors are unlikely to give you much medical information. Abruzzo recommends downloadable proxies offered by the nonprofit Five Wishes (fivewishes.org) for $5.
●Visit virtually. If the patient doesn’t have a smartphone and charging cable, or didn’t take one to the hospital, arrange for one.
●If feasible, move a loved one out of elder housing. Seniors are most vulnerable to this disease. If you can transfer them to their own house or your house with home health-care professionals, do it.
That wise-up-and-take-charge approach is only the tip of the iceberg of how a good patient advocate can help you better deal with the United States’ increasingly confusing and sometimes dangerous health-care bureaucracy.
For starters, simply choosing the right health-care provider can have life-or-death consequences. Washington Consumers’ Checkbook’s ratings of physicians and hospitals for high-risk surgery reveal enormous differences in patient outcomes — rates of deaths and complications, lengths of hospital stays, readmission rates — from provider to provider. Checkbook’s ratings of primary care doctors and specialists also spotlight significant differences in quality.
Through special arrangement with The Washington Post, you can access all of Checkbook’s ratings and advice (including reports on primary care doctors, specialists, surgeons, hospitals and much more) until July 15 via this link: Checkbook.org/WashingtonPost/Health.
And although hospitals can be dangerous to your health — preventable medical errors in hospitals kill an estimated 200,000 to 400,000 patients in the United States per year — today’s sprawling medical centers are increasingly hazardous to your finances, too.
Hospital fees and payment systems are labyrinths. It’s impossible to get price comparisons for various treatment options. Many systems have become adversarial toward consumers. And care decisions are often dictated by unseen, unfindable forces.
Navigating this medical maze is where patient advocates come in.
What is a patient advocate?
“I’m on the side of patients,” says Martine Brousse, an advocate who, for 20 years, was a billing manager “on the other side” for several health-care providers before opening Los Angeles-based AdvimedPRO in 2013. Her specialty is billing and insurance-related problems.
Skilled medical-billing advocates use their knowledge and noses for nonsense to find errors and apply esoteric consumer protection laws to get them fixed. Their expertise gets faster results that can reduce your financial exposure and ease needless stress.
Recently, Brousse says, she eliminated a $10,000 charge to a 19-year-old insured catastrophic stroke victim who had been billed for the difference between the insurer’s allowed amount and the provider’s charges, in violation of California law; and another $112,000 after the hospital erroneously filed the same patient’s claim with the wrong insurance company.
Patient advocates unfortunately don’t come free. Fees run from $90 an hour in rural areas to $200+ in big cities, and they’re not covered by insurance. Yes, you can do it yourself, but a pro brings expertise and calm that you probably lack.
Let's make a deal
Surprise medical bills can mug you for tens of thousands of dollars. A common gotcha: The anesthesiologist you were assigned was not in your insurance network, so you get smacked for nearly all the cost of that part of your care.
Advocates fight those fees and negotiate other prices. Hospitals, imaging centers, specialists and other health-care 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 much more than those with Medicare, Medicaid or no 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,’ ” Gross says. “I move them toward the Medicare rate.”
Finding the right providers
Some advocates help clients find the right hospitals, specialists and choices for their conditions. “A health-care navigator eliminates a lot of the stress and administrative burden of dealing with a serious illness,” says Elisabeth Schuler, founder of the D.C.-based Patient Navigator service.
Schuler is now helping one cancer patient find clinical trials after her 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,” Schuler says.
Advocates also watch for what can fall between the cracks. When a client with leukemia was being discharged, Sandy Thigpen, a board-certified patient advocate who founded Personal Senior
Advocates in Huntington Beach, Calif., noticed that a suction device used in his hospital room to prevent aspiration of saliva was not in the discharge orders.
The device was erroneously considered a “convenience item,” which insurance wouldn’t cover, so Thigpen pressed the discharge planner to establish its medical necessity, based on the patient’s history of potentially fatal aspiration pneumonia, which the device helps prevent. It was approved by the insurer, and an unnecessary threat was averted.
Getting quality care
A good navigator knows quality. When Abruzzo got a call last year from a woman whose husband had suffered severe burns and head and body trauma in a motorcycle crash, she knew the hospital he wound up in had a poor reputation for safety, and she jumped to get him out.
Within hours, Abruzzo got the patient into the burn unit of a top area trauma center, where he received expert, safe care. After three weeks, the hospital was ready to discharge him, but Abruzzo called a meeting to reassess the situation with the physicians in charge of the burn unit and surgical intensive care unit, and others.
Abruzzo’s 20-year career as a medical decision support specialist and critical care nurse in a hospital ICU gave her the expertise and gravitas that the doctors respected. As a medical professional herself, “I have reverent power,” Abruzzo says.
The team decided to keep the patient in the 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.
An advocate for Mom or Dad
Demand for advocates is rising among adult children of aging parents. Many live too far away to help Mom or Dad manage their routine health care, 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 Connie McKenzie, director of Firstat RN Care Management Services in West Palm Beach, Fla., and president of the Aging Life Care Association of advocates.
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.
How to find an advocate
●Start with free resources. Many hospitals provide on-staff patient advocates, which may help cut red tape and straighten out routine administrative mix-ups.
●Nursing homes, assisted-
living facilities and other senior living residences are subject to oversight by independent government ombudsmen, where you should bring complaints and concerns about neglect or abuse.
●If you need a professional, consult these organizations: the Alliance of Professional Health Advocates (advoconnection.com), National Association of Healthcare Advocacy (nahac.com), Aging Life Care Association (aginglifecare.org) and Patient Advocate Certification Board (pacboard.org).
Washington Consumers’ Checkbook magazine and Checkbook.org is a nonprofit organization with a mission to help consumers get the best service and lowest prices. It is supported by consumers and takes no money from the service providers it evaluates. You can access all of Checkbook’s ratings and advice, including ratings of local primary care doctors, specialists, surgeons and hospitals, free of charge until July 15 at Checkbook.org/WashingtonPost/Health.