CLEVELAND, Ohio — After spending three months at University Hospitals for a bone marrow transplant, Ron Gecsi was eager to return to his Port Clinton home. But there was one snag.
The 77-year-old business owner experienced multiple complications from the transplant, and UH wouldn’t discharge him unless he could get daily infusions for hydration while at home.
Gecsi turned to Julie Wenzinger, owner of the Sandusky-based Advocacy Healthcare Concepts and a board-certified patient advocate, for help.
Gecsi credits Wenzinger as one of the people who saved his life.
Wenzinger, who also is a registered nurse, is part of a growing profession that helps guide patients and their families through the health care maze. Often they accompany clients to doctor appointments, explain hospital bills and medical terms, aid in getting a second opinion, or organize paperwork.
In addition, Wenzinger was able to administer Gecsi’s daily infusions at his home.
She also accompanied him to appointments at UH’s Cleveland health center, and made necessary scheduling calls to cut down on multiple trips. Perhaps most importantly, Wenzinger helped the family find discounts that lowered Gecsi’s monthly bill for a cancer drug from $22,459 to $2,459.
As health care becomes more complicated and overwhelming, patients are looking for someone who can ease the load. Some hire private patient advocates. Others rely on hospital ombudsmen who can explain hospital procedures, fix scheduling snafus and explain bills.
There are differences between an ombudsman and a private patient advocate.
One difference is that private patient advocates help while a patient is in the hospital, and after he or she comes home. Hospital ombudsmen primarily offer assistance only while the patient is in that hospital.
Another difference is that while patient advocates have allegiance to their client, a hospital-employed patient advocate might have obligations to the hospital that could interfere, said Jennifer Skeels, an attorney with Hall, Render, Killian, Heath and Lyman, an Indianapolis-based law firm specializing in health care law.
Hiring a private patient advocate can bring peace of mind to adult children who live far from aging parents.
“I’m that second pair of eyes,” said Dr. Georganne Vartorella, who was inspired three years ago to start her company, Patient Advocacy MD, after caring for both of her parents through long illnesses. Her company has locations in Lakewood, New York City and Naples, Florida.
Vartorella is one of about 650 private patient advocates nationwide, and fewer than 10 in Ohio, according to the Alliance of Professional Advocates database. Some private patient advocates have medical or nursing degrees, though many do not.
Hospital ombudsmen
Hospitals also have advocates, called ombudsmen. They offer some of the same services as a private patient advocate, but ombudsmen focus on patients’ time in the hospital. Many answer billing and insurance questions, investigate complaints and act as a liaison between patients and hospital systems.
The Cleveland Clinic’s 34-person department handles complaints across the hospital system, except in London and Abu Dhabi. MetroHealth uses the term patient relations instead of ombudsman, and has three people in patient relations who deal with requests for help, concerns and grievances. And University Hospitals could not give the number of its patient advocates because the role is often part of other jobs, and it has staff at all of its hospitals responsible for taking care of patient concerns.
“[Patients] come to us so confused, and when they leave they are so pleased, they send thank-you notes,” said Stephanie Bayer, senior director of patient experience at the Cleveland Clinic.
Nearly every St. Vincent Charity Medical Center patient gets a visit from a patient representative who sits at their bedside and listens.
“We’re very hands-on,” said Anne Messer, who is a patient representative along with Marijo Atkinson. Noting she doesn’t wear scrubs, she said, “We hear more from patients than anyone in uniform ever will.”
Patients confide that they are homeless, or lack transportation or insurance. St. Vincent offers them help from the hospital’s on-site Legal Aid office or gives rides on its shuttle van. Patients also get help signing up for Medicare or Medicaid.
St. Vincent’s patient advocacy department works closely with the pastoral care office, as well as doctors and nurses, to address patient needs. “Patient advocacy extends to all caregivers,” Messer said.
The Cleveland Clinic’s ombudsman department handled more than 22,000 cases last year, Bayer said.
Most of the complaints involved a doctor not treating a patient respectfully or a treatment not being fully explained, Bayer said. She hears from patients who feel they were harmed during care or experienced a delay in booking appointments. Billing and insurance issues are handled by a separate department.
Bayer prefers not to be called a patient advocate; that implies she is interested in only the patients’ point of view. While the Clinic’s ombudsmen strive to be independent investigators, ultimately they work for and are paid by the hospital system.
Easing the load?
Hope, who lives in a Cleveland suburb and asked that her last name not be used, had an experience that soured her on hospital ombudsmen.
Hope’s 19-year-old son has had multiple disorders since birth and has been cared for by Cleveland Clinic specialists. In 2018, Hope asked the Clinic’s ombudsman office for a referral to a Clinic psychiatrist, but was told that because her son has ADHD, the hospital was unable to treat him. The ombudsman suggested that Hope instead contact a nonprofit agency that deals with behavioral issues.
“It was just so frustrating,” Hope recalled. “The advocate was no help to me at all.”
The Clinic said it was unable to comment on Hope’s situation because of HIPAA privacy guidelines.
Barb Krupa had the opposite experience with the Clinic’s ombudsman when she complained about a Clinic staff member who seemed unwilling to make an appointment for her. Krupa felt she was being rebuffed because she was uninsured and qualified for the hospital’s financial assistance program.
“I emailed a complaint to the hospital regarding my treatment as a second-class citizen. An ombudsperson called me, verified everything, apologized profusely for the prejudicial treatment I received (from the front desk, not the doctor) and filed a formal complaint against them on my behalf. I was surprised and impressed,” Krupa said in an email.
Costs and oversight
While most hospitals don’t charge for their ombudsman or patient advocate services, hiring an independent patient advocate can be costly.
Some private advocates charge between $75 and $400 an hour, according to an article in Vice, a digital media company, or they can charge a flat fee. Advocates interviewed for this story declined to say how much they charged.
Private health insurance and Medicare do not reimburse for the cost.
Private advocates and hospital ombudsmen also differ greatly in the amount of regulatory oversight they come under.
For hospital systems, federal regulations require hospitals to have a grievance process in place, the Clinic’s Bayer said. Patients also can appeal to the U.S. Department of Health and Ohio Department of Health and the Joint Commission, an independent, not-for-profit organization that accredits and certifies more than 22,000 health care organizations and programs in the United States.
There are no state or federal agencies that regulate independent advocates and no state licensing is required, said Trisha Torrey, founder and director of the Alliance of Professional Advocates, a professional organization for independent patient advocates, based in Leesburg, Florida. The Patient Advocate Certification Board implemented a certification program for private advocates in 2018, allowing those who pass an exam to become certified patient advocates.
Before hiring a private patient advocate, it’s important to find out exactly what the advocate will provide, and whether it’s more than a family member could do, health care attorney Skeels said.
However, patient advocates could be cost effective, especially if they help get patients out of the hospital sooner, or help avoid out-of-pocket costs by successfully following up on or disputing an insurance claim, Skeels said.
Although Gesci no longer sees his patient advocate regularly, he’s thinking about hiring her again for his upcoming knee surgery.
“The job takes compassion and knowledge,” Gesci said. “Not everybody could do it.”
Tips:
1. Here are websites that provide searchable lists of private patient advocates:
· The Professional Patient Advocate Institute
· Alliance of Professional Health Advocates
· National Association of Healthcare Advocacy Consultants.
2. Ask if an advocate is being paid a commission for placing patients in a specific nursing home or with other services, according to the NAHAC website.
3. To find a hospital ombudsman, call the hospital’s main line, and ask for the ombudsman or patient advocate office.
This story topic came from a Readers Call in early September. Please continue to send your health story ideas to Julie Washington at jwashington@plaind.com.