Several years ago, I was called urgently to our small obstetric triage unit because a pregnant patient was very sick. At the beginning of her third trimester, she had come in with back pain and a 103-degree fever. Her heart was racing, her blood pressure was dangerously low, and her oxygen levels were barely normal. In sentences broken by gasps for air, she told us her belly was tightening every few minutes — painful contractions, three months before their time.
Our team was concerned about pyelonephritis, a kidney infection that can develop from a urinary tract infection and can progress quickly to sepsis or even septic shock.
Within minutes, a team was swarming the triage bay — providing oxygen, applying the fetal heart rate and contraction monitor, placing IVs. I called the neonatal intensive care unit, in case labor progressed, to prepare for a very preterm baby. In under an hour, we had over a dozen people, part of a powerful medical system, working to get her everything she might need.
Breathing quickly behind her oxygen mask, my patient explained that she had noticed symptoms of a urinary tract infection about four days ago; she had gone to her doctor the next day and had gotten an antibiotics prescription. But the pharmacy wouldn’t fill it — something about her insurance, or a mistake with her record. She tried calling her doctor’s office, but it was the weekend, and she couldn’t get through. She read on the internet to drink water and cranberry juice, so she kept trying that. She called 9-1-1 in the middle of the night when she woke up and felt as if she couldn’t breathe.
This is the story of our medical system — quick, massive, powerful, able to assemble a team in under an hour and willing to spend thousands of dollars when a patient is sick.
This is also the story of a medical system that didn’t think my patient was worth a $12 medication to prevent any of this from happening.
This patient’s story is a result of the space between the care that providers want to give and the care that the patient actually receives. That space is full of barriers — tasks, paperwork, bureaucracy. Each is a point where someone can say no. This can be called the administrative burden of health care. It’s composed of work that is almost always boring but sometimes causes tremendous and unnecessary human suffering.
The administrative burden includes many of the chores we all hate: calling doctor’s offices, lining up referrals, waiting in the emergency room, sorting out bills from a recent surgery, checking on prescription refills.
On a recent average Wednesday, I saw several patients who had been unable to get crucial supplies or medications, or who missed appointments because of administrative burden. One had taken a precious morning off from work to ferry documents between a Medicaid office and her pharmacy to prove that she did not, in fact, have alternate insurance, and therefore her diabetic supplies should be covered. A pack of glucose test strips had cost her a small co-pay — and likely most of a day’s lost wages. That’s still cheaper than a hospital stay for a diabetic coma, depending on who’s paying.
There’s a general sense that all that unpaid labor required to get medical care is increasing. This is in part because as health costs spiral upward, health plans have tried to find incentives to steer treatment to reduce costs. These incentives can be a crucial part of managing costs in a country that spends about twice as much on health care, as a percent of its economy, as other high-income countries.
Sometimes administrative burden is a result of a good-faith effort to assist patients. For instance, a well-meaning rule by medical leadership to try to best utilize clinic resources can add delays for some patients. Sometimes a pharmacy wants to help a patient avoid a large bill, but doing so requires a long back-and-forth with clinic staff and the insurance company.
At the same time, creating administrative burden is a time-honored tactic for insurance companies. “When you’re trying to incentivize things, and you don’t want to push up the dollar cost, you can push up the time cost,” said Andrew Friedson, the director of health economics at the Milken Institute.
Administrative burden can work as a technique to keep costs down. However, part of the problem, Dr. Friedson said, is that we don’t count the burden to patients, and so it doesn’t factor into policy decisions. There’s nobody measuring the time spent on the phone plus lost wages plus complications from delayed care for every single patient in the United States. A recent study co-written by Michael Anne Kyle, a research fellow at Harvard Medical School, found that about a quarter of insured adults reported their care was delayed or missed entirely because of administrative tasks.
This burden falls most heavily on those who can least afford it: vulnerable people like cancer patients, those with complex medical conditions or those with a chronically ill child. I’ve observed that this burden splits along racial, ethnic and socio-economic lines. These tasks are more difficult for those who have hourly jobs, who don’t speak English as their first language or who can’t read complex documents easily. For many Medicaid patients, even just getting or staying enrolled in their insurance coverage can create hours of extra work that delay care.
For some patients, such delays will lead to serious consequences — and increased costs for the entire system. For my patient, the days of waiting for an antibiotic turned her easily treatable U.T.I. into a more serious infection that required a prolonged hospitalization and could have given us a very preterm baby, with attendant lifelong costs. That’s clearly not the way to save money.
There are some possible solutions. Dr. Kyle raised the idea of simplifying the paperwork that health care requires, for example, requiring all companies to use a universal form for medication approvals.
Another idea would be to follow the lead of private insurance companies that in rare cases provide a care coordinator to some patients with certain high-expense diagnoses such as cancer. One day, there could be a coordinator within the medical system who could act as a guide through the administrative maze. However, this work isn’t easily billable — reimbursement for care coordination and filling out forms is more difficult and less lucrative than for things such as delivering babies and performing ultrasounds, though the time spent may be the same and the necessity just as acute. Until this work is more universally billable, there will be limited support for this solution.
One of the first steps to any comprehensive solution would be a true accounting of the costs of administrative burden. Maybe we in the medical system do have to start counting up the hours patients and providers spend on the phone, in waiting rooms and filling out forms. That would be difficult: It’s not a metric the health care industry is used to evaluating. But it’s not harder than doing the work itself, as patients do.
My patient with the kidney infection stayed in the hospital for several days of IV antibiotics. Her vital signs improved and her contractions stopped. On her day of discharge, she asked us to hold off on taking out her IV. She was willing to initiate her discharge only once she had her outpatient prescriptions, those antibiotic pills, in her possession. She said that she trusted us, the medical team in the hospital. She felt we had saved her life and kept her baby safe. She just wasn’t sure she could trust the rest of the system to do the same.