“Patient Advocates” are not certified, and the field is not (yet) regulated. As an independent RN Patient Advocate for the last 6+ yrs, I help individuals with a variety of needs…researching conditions, guiding them to available options, navigating the medical system, encouraging family/physician communication, etc. Helping patient-clients achieve their highest level of health and well-being is a much needed and rewarding process to advocate for.
Patient Advocates Help Navigate Health Care
by Constance Gustke
Moreover, despite efforts to rein in costs, the system is still driven by a pay for service model, which encourages excessive procedures and inflates prices, she added. “We’ve been sold a false model, like having too much imaging,” Ms. McGiffert said.
Finding an effective patient advocate isn’t easy. Currently, there is no certification, and anyone can qualify. Courses are being offered at over 30 universities and colleges, but there are no common guidelines. As a starting point, Ms. Torrey said, patients should ask potential advocates whether they have handled similar cases.
Elsa Newmyer taking stock of the medications she needs every day. Andrew Mangum for The New York Times
Ms. McGiffert agreed, suggesting that patients should ask for referrals from at least three previous clients. She also encouraged choosing someone without a stake in the system. “A patient advocate hired by a hospital or health plan probably won’t be the best person,” she said.
Advocates can be costly, which makes selecting a good professional even more important. The hourly rate ranges from $100 to $450, especially as more doctors come into the field and more research is required to determine the value of emerging treatments.
“Specialty illnesses take some real digging,” said Elisabeth Schuler Russell, founder and president of Patient Navigator. The firm, which charges $150 an hour, scours academic literature and reviews drug trials to uncover more information, among other tasks.
Ms. Schuler Russell, a former foreign service officer, taught herself to navigate the medical system when her daughter was diagnosed with an inoperable brain tumor. “There’s no guidebook or lifeline,” she said.
In the case of Ms. Newmyer, Patient Navigator’s advocates also helped her find a doctor at the Cleveland Clinic to handle a rare illness that threatened her life as well as a good local gastrointestinal doctor and nutritionist. They even attended internist appointments with her.
“Patients can focus on their own healing,” Ms. Schuler Russell said. “We save them stress, time and money.”
Jane Morrison, 67, had a good experience working with a patient advocate when she was employed by IBM. So Ms. Morrison, who lives alone and is housebound, turned to a patient advocate again when medical bills began piling up.
“My advocate has saved me thousands of dollars,” said Ms. Morrison, who lives in Roswell, Ga. Her advocate also helped her sign up for Social Security and hire a more trustworthy caregiver. “She has connected me to resources, and checked in to see if my nursing care is going well,” she added. “When you’re ill, you’re not up to embracing details.”
Many patients find it hard to negotiate for themselves. “They have more traditional, accepting patient roles,” said Judith Hibbard, a professor of health policy at the University of Oregon. “Advocates can help in a number of ways.”
Dozens of medical bills, some 30 pages long, began piling up after Elsa Newmyer had surgery last year and spent months in a hospital bed afterward. Andrew Mangum for The New York Times
Some doctors, seeking to challenge the increasing bureaucratization of health care, have changed roles. “Part of medicine was being pushed out by insurance companies,” said Dr. Annette Ticoras, who became a patient advocate two years ago. “I knew I had to do something.”
Dr. Ticoras, who charges $200 an hour, now helps people understand complex medical explanations, especially ones for complicated diagnoses. She also accompanies people to hospitals, books medical appointments and researches the best doctor for rare diseases or clinical drug trials.
Families can be effective advocates, she said, but they are not always experienced. And as patients’ medical options multiply, choices can be more difficult, said Dr. Ticoras, who lives in Columbus, Ohio.
“Patients are demanding full disclosure of their options,” she said. “Previously, you were instructed by the doctor.”
Kathy Schmidt, 59, started working with Dr. Ticoras a year ago. Mrs. Schmidt had been sick for over eight years, and bedridden most of that time. “When I called a doctor, I got the runaround for weeks,” Mrs. Schmidt said. She said she endured surgeries she didn’t need. “I needed someone who was an expert and could work through the medical jargon.”
With her permission, Dr. Ticoras talked directly to Mrs. Schmidt’s doctors. As a result, Mrs. Schmidt ended up having a final surgery that solved her health problem.
For people with chronic illnesses, advocates can be particularly helpful. Ms. McGiffert said. Another reason to hire outside help is when you are being pressured by insurance coverage. “But if you have a good health plan, you might not need one,” she said.
With digital processing of medical bills, it is now possible to have them analyzed online. Using crowdsourced data, the patient advocacy site Copatient lets consumers upload their bills for review, get a free report, and then opt to use an advocate to negotiate savings. Copatient receives a share of the savings.
More than 20,000 patients have registered for Copatient, which began three years ago.
“Many consumers aren’t aware that you can negotiate bills,” said Rebecca Palm, co-founder of Copatient. “So we do a lot of work to educate the market.”
Ms. Newmyer has regained her pre-surgery health and is out and about in the world again. “I’m profoundly grateful,” she said.
A few years ago I was called by the family to advocate for a man in the Emergency Department who had suffered life-threatening injuries. I agreed, although I didn’t know the patient or the family. One by one they arrived, everyone grief stricken. With knowledge and a practice of very basic Therapeutic Touch skills, I began doing this. When I asked what would offer comfort, the wife requested a specific person to do an ethnic ritual. I contacted this person, and also asked for two hospital chaplains to be present. A massage therapist (cousin) began touching and massaging her family. Within the next few hours the room had quieted and a supportive energy was palpable. The ED staff had stepped aside as much as possible and let the rituals and grieving happen. The patient was later admitted to ICU, and passed away the next day.
This story emphasizes several issues that are important to address:
- How do you want to be treated at the End of Life? I’m not talking about “No Resuscitation”, but who do you want present, what do you want happening around you, what comfort measures would be important, etc. Five Wishes does an excellent job of presenting the questions, and it’s a legal document in 42+ states (www.agingwithdignity.org).
- Gather the family and have the conversation. Innumerable times patient-clients have told me…”Oh, my wife will know what I want (substitute son, niece, partner, etc.)”. No they won’t! In emergency situations, and/or when a long lost relative decides to show up, an individual’s end of life wishes can be far from what actually happens. Have the conversation around the family table and document the wishes of everyone over 18 years old.
- The majority of my clients say they want to die at home, with their family present. Unfortunately that’s not always the case, and emphasizes the need for a legal document that clearly designates your wishes, health care agent, durable medical power of attorney, etc.
- With increasing emphasis on the “Patient Experience”, healthcare facilities are more accommodating of patient/family wishes. This is an opportune time to request comfort measures…..aromatherapy, Healing Touch, massage, prayer rituals, acupuncture, etc. Conventional medicine has much to learn about complementary modalities, and there’s an increasing desire to do so.
- As you or your family engage in supportive, healing therapies, tell your primary care physician about it. Ask your insurance company to reimburse for services. We’ve talked about holistic care (body, mind, spirit) for years, and now’s the time for an integrated model to be recognized.
- Medical errors remain the #3 cause of death in the U.S. Always have a friend, family member or paid advocate at your side if you’re admitted into a medical facility. Someone needs to be a second pair of eyes and ears and an empowered voice for you.
I’ve been a member of the American Holistic Nurses Association since the 1980’s, an organization that grew out of the need to heal the healer and prevent nursing burn-out. AHNA emphasizes the holistic needs of the health professional – through self-assessment, personal development, and stress management. Holistically caring for ourselves (body, mind, spirit) is an absolute prerequisite before effectively caring for others.