I was sitting in a hot bath when I noticed it: A mole on my forearm that looked distinctly darker than its surrounding peers and was strangely misshapen, like a galaxy that had overrun its borders.
A misshapen mole. A mole that’s changed color. I know enough about skin cancer to realize these were potential warning signs.
Mind you, I have plenty of dermal land mines to worry about, having been raised in the pre-sunscreen era, when children frolicked unprotected under the sun and bikinied young women regularly slathered themselves in baby oil, a tanning accelerant that all but shouted, “Hey, melanoma! Here I am!”
I knew that to see a dermatologist, I had to get a referral from my primary care provider under the rules of my Medicare Advantage plan. So I called my primary care doctor’s office and requested the referral. The office staff person said she would send one over to the dermatologist I had selected from my in-network provider list.
That’s when the fun started.
Days passed. I called the dermatologist office to see if they’d received the referral. They hadn’t. I called my primary back; they’d sent it, but would resend. Days passed. I called the dermatologist’s office. They had the referral but it didn’t have the right “codes” to bill my insurance. I had to call my primary back and ask them to resend with the right codes. They did. Days passed. The dermatologist office said additional codes — for some reason, nine of them — were still needed. I called the primary back.
Back and forth we went, a disturbed game of medical telephone that had me feeling like a ping-pong ball. Why couldn’t they just talk to each other? Why was this so complicated merely to get a mole looked at?
Meanwhile, I imagined microscopic pieces of cancer chipping off from the mole subdurally and circulating through my bloodstream.
Finally, the receptionist at my primary care sent an old-fashioned fax to the dermatologist and all was resolved. Days later, a very pretty and efficient female dermatologist spent about one and a half minutes with me, in which she looked at the mole with a special lens, told me it was garden-variety sun damage, wrote down the medical name for it on a piece of paper and handed it to me, then looked at both of my arms, told me I had lots of sun damage and needed to always wear sunscreen and long sleeves.
And with that, my harrowing brush with death was over.
This would all be pretty funny except that it didn’t feel funny when it was happening.
There’s actually a term for what occurred with me and my worrisome mole: It’s called “administrative burden,” and it refers to all those frustrating interactions people can endure as they try to access health care, from lining up referrals to filling prescriptions to communicating with physicians and their staffs.
It involves the hours spent on the phone or filling out medical forms or waiting in ERs and doctor’s offices or sorting out insurance bills or wondering why no one has called you back with the results of that test or to bestow the dreaded “prior authorization.”
If you’re reading this and have a body and a health insurance plan, you’ve likely experienced administrative burden at some point in your life.
While my bout with medical bureaucracy was relatively low-stakes and somewhat silly, the consequences of ubiquitous health-care system red tape can be serious indeed, even deadly.
Take what happened to Bruce, a mild-mannered, soft-spoken, genial guy who is a long-time member of the program for folks with serious mental illness that my husband Mark started 20 years ago. (I’m not using Bruce’s last name for privacy reasons.)
Last July, Bruce was waiting at the bus stop when he fell and hurt his leg. A staff member from the program picked him up and drove him to one hospital, where he was assessed. (I’m also not naming the hospitals involved here.) Then he was taken by ambulance to a second hospital.
Bruce takes medication for schizophrenia, and it’s vital that he receive it at regular intervals to forestall serious issues, such as experiencing a psychotic break. The morning of his fall he’d taken his medication; by that night, he needed his pills but didn’t have them with him at the hospital.
Some psychiatric medications are tricky; if a patient stops taking them for a time and then restarts, the pills may no longer work for them.
A very real clock was ticking for Bruce.
Mark, who was about to go on an out-of-town trip, called the hospital and talked to a floor nurse, telling him Bruce had schizophrenia and someone was retrieving his meds from his apartment and bringing them to the hospital, since it was crucial for him to take them. The nurse told him not to do that; the hospital would provide his prescribed medication. Mark again stressed how key it was for Bruce to get his pills. The nurse said not to worry.
The next morning, Mark called Bruce. While the hospital was conducting tests on his leg pain, he had not been given his schizophrenia medication. Mark then talked to a nurse, who said they couldn’t administer the medications because they were waiting for a doctor to order them. Mark called again later that morning and spoke to a social worker, who assured him that during rounds that morning she would let the physicians know Bruce needed his psychiatric medication.
Mark called a couple of hours later and a nurse said Bruce couldn’t be given the medication because he was having trouble swallowing. Mark asked if it could be given in liquid form or an injection. She said she couldn’t discuss that with him because of privacy rules.
Mark again called that afternoon, when Bruce was doing physical therapy, and a nurse assured him that the medication had been ordered and would likely be administered with the hour.
“I called early that evening and was told by a nurse that the meds had been OK’d by the doctor, but they were waiting for the pharmacy to sign off on it,” Mark said. “That’s when I totally lost it. I told her I was filing a formal complaint. She didn’t want to talk to me after that.”
Finally, around 9 p.m., Bruce relayed that he’d been given his medication — after going about 36 hours without it.
Mark, who’d made more than a dozen calls with Bruce throughout this fiasco, said the most interesting thing was how Bruce’s demeanor changed after getting the medication he’s depended on for his mental wellbeing for decades.
“He was incredibly anxious and worried about his meds, and kept talking about how much physical pain he was in,” Mark said. “When I talked to him after he got his medication, everything was great.”
Mark recalled how another program member once was released from a psychiatric hospital on a Friday with a handful of prescriptions. But the pharmacist at Walmart couldn’t read the doctor’s writing and refused to fill her order. Like many who get ensnared in administrative burden, the young woman didn’t have the knowledge or the wherewithal to advocate for herself and jump over the red tape. By Monday, she was back in the psychiatric hospital.
Not only is administrative burden incredibly frustrating and often dangerous — delayed care can often translate into no care — it’s more expensive than more streamlined processes, even though insurance companies often purposely employ administrative burden as a way to cut costs.
One physician wrote in the New York Times in July of a pregnant patient who ended up in the hospital with a severe infection and near death because a pharmacist wouldn’t fill a simple prescription for a urinary tract infection medication over an insurance-related quibble. This happened during the weekend and the woman couldn’t get through to her doctor’s office. She tried to self-treat by drinking cranberry juice.
By Monday, she wound up in the emergency room, where it took a squadron of doctors and tens of thousands of dollars to save her and her baby. But, hey, at least the insurance company didn’t have to shell out for those $12 antibiotics!
Administrative burden causes tremendous and untold human suffering, and tends to fall hardest on those who are less educated or don’t speak English or lack the time or energy and sheer intestinal fortitude to advocate for themselves through the maze of medical bureaucracy.
(For the record, I’m not blaming medical office staff, who after all are just doing their jobs and no doubt feel buried under paperwork and bureaucracy themselves. I don’t think these folks are sadists, although some could doubtlessly use more training. I herewith apologize to all medical phone jockeys with whom I’ve been brusque as I’ve pulled my hair out during bouts of administrative burden.)
But something needs to change.
Data shows the weight of administrative burden is increasing. One study found that about a quarter of insured adults reported their care was delayed or missed entirely because of administrative tasks.
Surely America, a rich country that spends about twice as much on health care, with worse outcomes, compared to other developed nations, can find a way out of this hellish health care hamster wheel.
Some suggested solutions include simplifying and universalizing medical forms or creating care coordinators who guide patients as they negotiate the medical labyrinth. Both would be good starts.
Bruce’s leg pain turned out to be a pulled muscle. My mole was a nothingburger. But what about the emergency next time?
