Patient guides prove indispensable for those with cancer
Published: Monday, November 12, 2012 at 8:17 p.m.
Last Modified: Monday, November 12, 2012 at 8:17 p.m.
By the time Melba Carter arrived at the Community Cancer Center of North Florida, she had been shuffled from one doctor to the next: first her primary care physician, then a surgeon and finally a dermatologist.
At the Community Cancer Center, she was diagnosed with metastatic melanoma, an advanced form of skin cancer, but her doctors still don't know where the cancer actually started.
Cancer is a disease of chronic uncertainty, especially if the disease, like Carter's, is metastatic, meaning the cancer cells travel throughout the body. Living with cancer also creates a lot of uncertainty in patients' lives, from the question of how long they might live to how they will pay for treatments.
Carter, 76, had questions, too. She wondered if she still could get cataract surgery and the flu shot. She wanted to get some financial help for her 1½-hour daily commute from Wellborn to receive her treatments so she wouldn't have to stay in a camper while she was undergoing chemo.
Carter called patient guide Tina Lloyd with her questions, and Lloyd found all the answers. Carter had the surgery and got the flu shot. She also got $400 for gas money.
Patient guides, or navigators, like Lloyd are growing members of health care teams. The Patient Protection and Affordable Care Act formalizes the role of patient navigators by mandating that every state health insurance exchange establish a navigator program, something the American Medical Association backs.
According to the AMA, “Patient navigator programs have various goals in the current health care environment, including reducing health disparities, improving clinical outcomes and ensuring patient access to care.”
The number of navigators nationwide jumped 41 percent between 2005 and 2007, and in 2009, more than 700 hospitals had patient navigator programs. Both Shands at the University of Florida and North Florida Regional Medical Center have patient navigators.
For Dr. Uma Iyer, a hematologist at the Community Cancer Center who works with Lloyd, patient guides are indispensable in the evolving health care system. “I believe the intention of Obamacare is very good, but there is a lot of redundancy. For it to be done efficiently, we really need someone like this.”
Iyer described Lloyd as “a patient advocate, case manager and social worker all rolled into one. I think she's made a lot of things easier for both us (physicians) and the patients … sometimes what we say doesn't always translate to patients.”
Jeanette Pesta, a lung cancer patient, said, “When you're diagnosed, all you hear is that word ‘cancer.' Tina was great. The first time we met, she said my breathing was not that good, so she got me a breathing machine for home.”
Lloyd has helped hundreds of patients unpack a cancer diagnosis into a plan of action that often includes helping them make their appointments, take their medications and sign up for Medicaid benefits.
“You're dealing with patients who can't read or write sometimes. They don't know how to use a computer,” Lloyd said. “It makes a big difference having a person sitting down next to them.”
A lot of the patients Lloyd works with are uninsured, so finding financial resources for them is a big part of her job. “Even if it's just $1,000 up front (for medications), you've got patients living week to week or out of Social Security,” she said. “Cancer treatments are very expensive.”
Iyer recalls a patient with infected teeth whom Lloyd helped find resources for the dental work she needed to do before receiving chemotherapy. With Lloyd's help, the patient paid just $5 to get her teeth fixed. “That woman had metastatic breast cancer, and she is doing just fine today, and it's all because we could do everything on time,” Iyer said.
Timely treatments are often critical in cancer care, and a recent study in Cancer Epidemiology Biomarkers and Prevention showed that patients paired with guides received tests and treatments faster than unmatched patients.
Iyer said Lloyd's know-how with the insurance system is extremely helpful. “I have to say that very few physicians really understand the system,” Iyer said. “When you have someone competent in this, it's a win-win situation.”
Lloyd trained at Santa Fe College as a respiratory therapist and worked as one for many years before becoming a patient guide. She also had worked as a clinical liaison for home health care and a case manager.
“I think that knowing I'm in this role ,maybe patients don't worry so much at night,” Lloyd said. That's mainly because she takes on some of their burdens. “I remember one lady called me while I was on my way home and said she'd just been given six months to live and she worried about how she was going to pay for her burial.”
Lloyd ended up finding resources for that woman — and then donated flowers for the woman's casket.
“That wasn't part of my job description,” said Lloyd, adding that the sense of trust the patient showed in her moved her to the gesture. “Every person who walks in that door has their own story. I'm going to get emotionally attached.”
And that's both rewarding and tough, Lloyd said, but as a long-standing medical professional, she has found ways to ensure she takes time out for herself, too. She enjoys spending time with her daughter, a soon-to-be nurse, and her husband of 23 years. She said her job makes her value her loved ones even more.
On the job, Lloyd has learned to stay upbeat through tough situations.
“You just have to make it positive,” Lloyd said. “I love helping patients and making a difference in their lives.”
Contact Kristine Crane at 338-3119 or firstname.lastname@example.org.