La Jollan publishes ‘Runaway Medicine’ to educate patients about ‘over-testing, over-diagnosing’
As a cancer survivor and former emergency department physician, La Jolla resident Carolyn Barber has seen the good, the bad and the ugly of the medical field. To help patients advocate for themselves and ask better questions of their doctors, she recently published a book, “Runaway Medicine: What You Don’t Know May Kill You.”
“I’m trying to share my personal experience with medicine as a patient and a physician and explain some of the problems I’ve encountered,” she said. “Over-testing, over-diagnosing and over-medicating are rampant right now.”
Barber said she wants patients to know what questions to ask about procedures and to make sure they’re getting the care they need — and not more than they need.
“We have been in a culture where the doctor told the patients everything and we just accepted it; now the patients engage with their physicians more,” she said. “I think a lot of physicians are doing the best they can and are in the field for the right reasons and want to help people. But there is pressure to do procedures because you get more money that way. That’s just how we’re reimbursed. We are tracked by how much money we are bringing in every hour. Your job could depend on it.”
She said there is additional fear that doctors could “miss something” and may over-test as a precaution.
“Let’s say you come in out of breath and I did a CAT scan and we find what we call incidentalomas [or incidental ailments]
— these little things that don’t look completely normal,” Barber said. “With the incidental ailments, we would likely do repeat imaging of these to follow them for months or even a few years (exposing you to further radiation). If we were concerned, we would refer you to a specialist who might do a biopsy, etc. And the biopsy ... could potentially cause a pneumothorax, or a hole in the lung.”
So what are some questions patients can ask?
“Ask for another opinion if it’s something important, especially if you are looking at surgery,” she said. “I have a friend with a cyst in his knee, but his doctors are suggesting a total knee replacement. So he should get another opinion.”
In the event of surgery, she recommends asking who will be involved in order to avoid being saddled with out-of-network costs. “Let’s say you know you are going to have a surgery. Your surgeon may be in network, but maybe the radiologist or anesthesiologist could be out of network and you can get a bill your insurance won’t pay for,” she said. “You can check on that ahead of time.”
Also, she said, ask what tests were ordered and whether they are all needed. “Tests would be ordered at check-in, which often means that extra tests get ordered which we just don’t need,” Barber said. “I think having a candid conversation about why they are doing a test, understanding the risk and how necessary it is, is crucial.”
The latter is something Barber understands firsthand. She was diagnosed with a rare salivary gland cancer at age 23 that manifested as a tumor in the roof of her mouth that was sitting on top of an artery and, when it was found, was the size of a golf ball.
“With little discussion beforehand, I underwent radiation therapy as a complementary treatment to my surgeries,” she writes in “Runaway Medicine.”
“Some of the complications from those treatments have changed my daily life forever. Significantly, a procedure to close a small hole on the roof of my mouth by using a skin flap failed immediately, very likely because of the prior radiation. The hole became much larger, and it now affects my speech to the point that I am often misunderstood, especially on the phone. I experience chronic sinusitis and headaches, with fairly frequent acute infections.
“Radiation may have been the right call at the time; we didn’t have a lot to go on, as my diagnosis was unusual. But the complications were severe, and some were not discussed. We are more aware now of the risks associated with many treatments — and, for some, the stunningly low rates of effectiveness.”
“Runaway Medicine” was published in September and sells for $3.99 for paperback and 99 cents for e-book download. Learn more at carolynbarbermd.com. ◆
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