Advocates can guide patients, families through medical maze, yet growing field is not licensed.
“I was overwhelmed when my husband, Herbert, had a stroke two years ago,” recalls retired teacher Joan Brode of Huntington Woods. “It was my patient advocate, Dr. Abi Schildcrout, who guided me through this medical crisis, explaining what had medically taken place and describing what was likely to happen next.”
Schildcrout works out of her home office in Huntington Woods as a personal medical advocate. She helps clients understand how the medical system works, translating the explanations and directions from doctors so they understand the diagnosis and the options available for recovery.
“As a coach, guide and teacher I empower my clients to become their own best advocates,” she says. “I help them find second opinions, decipher their medical records, and understand their test results and why specific treatments are recommended. I teach them to communicate effectively and establish better relationships with doctors so they’re comfortable with the medical decisions they make.”
Patient advocacy has emerged as one of the fastest-growing professions of the decade in the health industry. The need is huge simply because the healthcare system has changed to the point where most of us don’t recognize it and are afraid that we won’t get the care needed. As a result, patients and their caregivers are increasingly reaching out to patient advocates for help.
The purpose of the patient advocate is to help patients become informed about what’s happening to them and to have a voice in their own healthcare decision-making.
Over the last 20 years, there’s been an interest in expanding the care team so that patients have a professional’s expertise in dealing with the complexities of their illnesses. Given the decreased time for medical office visits and the trend toward chronic disease management via phone and Internet, more patients look to professionals who can provide a more personalized assistance in their health care.
Complicating the issue are the different terms patient advocates use for what they do such as health advocates, patient or health navigators, case managers, care coordinators — all representing someone who works one-on-one with patients. Moreover, advocates offer a range of services, including accompanying patients to doctors’ appointments, sitting by a hospital bedside, reviewing medical diagnoses and treatments, reviewing and negotiating medical bills, and training family members how to advocate for sick relatives.
Several universities and professional organizations have programs certifying studies in the patient advocate field. Some are excellent, others not very good, but since there is no standardization, they aren’t a nationally recognized credential. Those hiring patient advocates will want to be familiar with the pros and cons of these credentials.
To date, there are no curricula requirements and no license guaranteeing specific skills, and no state or federal regulations. There are several colleges, such as the University of Wisconsin and University of California-Berkley Extension, that offer coursework. There are also at least two associations offering certification and training: the Professional Patient Advocate Certificate Program and the Alliance of Professional Health Advocates.
Even so, anyone can hang up a shingle and title themselves a professional medical advocate. However, the bar for qualifications is raised when physicians decide to become medical advocates rather than practicing traditional medicine.
“I call myself a personal medical advocate because of my medical degree and training, so that I approach my clients’ situations from a doctor’s point of view,” Schildcrout says. “It’s easier for me as a physician to get a response from a researcher or another physician than if my client tried to do the same.”
Schildcrout attended Wayne State University Medical School and completed her residency and was board certified in internal medicine. She worked briefly as a hospitalist and then started Practical Medical Insights.
“This work gives me immense personal and professional satisfaction,” she says. “In fact, I’m finishing a guide book for people who find themselves or a loved one in a hospital. I want my clients to have the information they need to make the choices that are right for them.
“Many times I’m able to save my clients much frustration because I’m familiar with the medical system and what it takes to navigate safely through,” she says. “I want my clients to feel that I’m their doctor in the family.”
After 29 years in private practice as an allergy and asthma physician, Dr. Carol Gordon Devore of West Bloomfield, changed directions. This year, she started Amazing HealthCare Consultants in Troy, a medical advocacy business.
“The confusing healthcare system is often referred to as the healthcare maze, and my goal is to help patients successfully navigate this maze,” says Devore, who identifies herself as a private healthcare advocate or personal healthcare advocate. “It’s likely to become even more confusing when more of the Affordable Care Act comes into play.”
Although she has hung up her stethoscope, Devore loves being a doctor and plans to use her knowledge and skills to help clients by preparing them for doctors’ visits, teaching them to ask the appropriate questions and showing them how to get the answers they need. She has partnered with Rachel Decena of Waterford, a healthcare claims specialist, to help patients with medical billing and insurance. “Rachel will be a huge asset to my business because she understands a client’s insurance coverage and can relieve families from dealing with all the claims that arrive following a treatment and recovery,” Devore says.
“I think part of my interest in creating this business is based on the Jewish values of kindness and compassion, and respect for the elderly,” she says. “My husband, Mark, a gastroenterologist, and I have always been guided by these principles in our interaction with our family, friends and patients.”
Nurses As Patient Advocates
Laurel Felsenfeld of Farmington Hills, a certified case management nurse and rehabilitation nurse, titles herself as a healthcare advocate, navigator and coach who works with individuals on a private pay basis. Her typical client is a family or individual struggling to find the right care and support resources for dealing with a serious diagnosis.
Since opening her business 16 years ago, Felsenfeld often is called upon to research leading treatment centers for conventional and alternative options, organize medical records for second opinions, schedule and coordinate appointments, and find local and online support groups.
“Some clients approached me as an independent adviser because they felt the hospital case manager limited recommendations only to their healthcare system,” she says. “I can connect clients to clinical trials, arrange for a nurse to attend appointments, and find a mentor who has experienced the same or comparable diagnosis.”
Felsenfeld emphasizes the importance of having a professional health care advocate for appointments because she finds most family members are too emotionally involved to objectively listen, ask questions or take adequate notes.
She also does geriatric care management, assessing and coordinating life care needs for older persons facing challenges in daily living such as memory loss, loss of mobility or caring for a spouse.
“Laurel is the director of my mother’s health,” says Dan Weiss of West Bloomfield. “My mother suffers from Alzheimer’s and lives in a group home. With Laurel’s help, she has maintained an active lifestyle these past three years.
“When mother was in her condo, Laurel rearranged the rooms to reduce her chances of falling. She’s the one who helped us get mother’s car keys. She’s the one who sits down with the family and gives us guidance so we can make tough legal and health decisions. Laurel has been like an extra sister,” Weiss said.
“It is buyer beware when it comes to hiring a health advocate because there is no required license to practice,” Felsenfeld says. “A lay person who has cared for a spouse or parent can claim to be an expert. However, a professional patient advocate that is a licensed health care professional must practice according to the professional standards of the licensing board for that profession of that state.
“In addition, certified case managers must have met the education and experience requirements for those certifications and must have the required continuation education hours to maintain them — a good reason to ask for credentials and experience when hiring a patient advocate.”
Felsenfeld feels her profession will continue to grow as consumers see the value in getting what they need faster and more efficiently.
Social Workers As Advocates
Miry Bernard Serlin established Michigan Senior Planning in Bingham Farms, a private geriatric case management business, in 2010 after serving as director of ElderCare Solutions of Michigan, a division of Jewish Family Service (JFS) of Metropolitan Detroit.
“I work with families to find the best care and treatment for older patients,” she says. “It may include researching a patient’s diagnosis, taking notes during visits to doctors or finding medical specialists. Frequently, it involves bringing families together because not everyone wants the same thing for their mother. My job is to make sure they do what the patient wants, which is often about making life comfortable, particularly at the end.”
Serlin has hired two additional case managers so that clients can access their services 24/7.
Patient advocates have been around for decades but geriatric care managers, or care coordinators, are a somewhat new health care area. Researching and coordinating all of the care options for seniors is a huge commitment. Families prefer using their time visiting parents rather than juggling paperwork. As a result, social workers, nurses and other professionals came to believe that they could make a profession out of helping caregivers. They hung out their shingles and a profession was born.
“I find that most geriatric care managers are social workers, nurses or others who have worked in the elder care field,” Serlin says. “Because credentials and regulations haven’t made it to this industry, it’s always a good idea to ask what qualifies them to do what they do. It’s not good enough if they respond they just happen to ‘like seniors.’”
Serlin believes they should be able to demonstrate some experience dealing with serious medical events. She suggests asking for more than one reference before hiring anyone, checking them all and calling local agencies to see if they can give you a referral.
Private Advocacy Costs
Paying for private advocacy services is not covered by your insurance nor will it be covered by the Affordable Care Act (ACA). The good and bad news is your insurance won’t limit your coverage, but your wallet will.
The cost to hire a private advocate depends upon the types of services and the complexity of your needs plus the background and expertise of the person you hire.
It is impossible to put an accurate price tag on the cost of advocacy services because there are so many variables. Advocates usually charge by the hour, with fees generally ranging from $50-$150, although some services may range from $300-$500. Many advocates offer packages or bundles of services at a reduced rate, particularly over a longer period. These may be monthly fees.
Before you hire anyone, ask what they charge for their services, keeping in mind the value you’ll receive. How much are you willing to pay if you know your surgery has a better chance for success or if the quality of your life will improve?
Employees of this division of JFS serve as geriatric managers who work with private clients.
“A patient’s data is on our computers so that we can work as a team during an emergency and have someone available 24/7,” says Lynn Breuer, MSW, JFS marketing associate and geriatric manager. “We provide a single contact source for medical and legal documents, and insurance information. We assist with hospitals and doctors, advocating for the patient and providing insight to doctors regarding changes with the patient’s physical or cognitive condition. We also let families know any medical changes that take place.”
In general, always ask a patient advocate if they have handled cases similar to yours or your family member’s. You want to trust this advocate and be able to collaborate with her and others involved with your loved one’s care. Previous experience working with patients with similar health issues is a good indication of whether or not you’ll be able to develop that rapport.
Choosing A Patient Advocate
1. First prepare to contact and interview the names of patient advocates on your list. Keep in mind there is no licensing, professional requirements and no standard fees or procedures for patient advocates.
2. Ask for referrals from your own physicians and friends. Visit www.AdvoConnection.com and check out its directory of advocates. No charge. NAHAC (National Association of Healthcare Advocates) also has a directory.
3. Request a resume of their education and ask if they have an active license in a medical area. It is a good idea for the advocate to have at least a bachelor’s degree in a health care field. Again, keep in mind there is no nationally recognized credential for patient advocates. There are some certificate programs, but those graduates are not certified in the traditional sense. If the patient advocate you’re interviewing says she is certified, find out all the details about the certification.
4. Know exactly what their fees cover and what they charge for their services. Services may include doing health assessments, reviewing insurance and bills, or researching a disease. If the advocate charges by the hour, you need to know how long the service will take to do the job. You may receive a range of hours and a range of total costs.
5. Where is your patient advocate located? Does business take place at an office, at your home or over the phone? Is your patient advocate on call 24/7? Do they have specific hours?
6. Find out whether they provide written reports about the services provided.
7. Do they have experience across a broad spectrum of healthcare, from hospital to home care?
Affordable Care Act Impact
The ACA continues to change the face of healthcare in America. The first changes became effective after passage in 2010, and new parts of the law will be implemented Jan. 1, 2014, when the biggest part of the law, the individual mandate, ensures almost every American has some form of insurance or government coverage to pay for health care.
Before you hire an independent health advocate, make sure they are well informed about some of the important aspects of this bill.
Independent health advocates should be prepared for those changes and be able to help their clients. For example, they should be able to explain the individual mandate to purchase health insurance for those without coverage and may be called upon to help them make the right choices.
Patients with pre-existing conditions now will find coverage that was not available previously. A patient advocate should be able to point them in the right direction to find resources.
A patient advocate also should know about the dozens of benefits from the preventive health measures in the bill, such as blood pressure screening, depression screening, obesity counseling, STD (sexually transmitted disease) screenings, breastfeeding counseling and some vaccines. An advocate’s job is to make sure patients don’t get billed for these tests and that they’re taken at the appropriate time.
By Ruthan Brodsky, Contributing Writer