Several years ago, I was called urgently to our small obstetric triage unit because a pregnant patient was very ill. At the beginning of her third trimester, she came in with back pain and a 103 degree fever. Her heart was racing, her blood pressure was very low, and her oxygen levels were barely normal. In sentences broken by gasps of 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 quickly progress to sepsis or even septic shock.
Within minutes, a team was floating on the triage bay — providing oxygen, taking the fetal heart rate and applying a contraction monitor, placing IVs. I called the neonatal intensive care unit, in case the labor progressed, to prepare for a very early baby. Within an hour, over a dozen of us, part of a powerful medical system, were working to get her everything she could possibly need.
Breathing rapidly behind her oxygen mask, my patient explained that she had noticed symptoms of a urinary tract infection about four days ago; she went to her doctor the next day and got a prescription for antibiotics. But the pharmacy wouldn’t fill it – something about her insurance, or a mistake with her record. She tried to call 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 like she couldn’t breathe.
This is the story of our medical system – fast, huge, powerful, able to assemble a team within 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 gap between the care providers want to give and the care the patient actually receives. That space is full of obstacles — tasks, paperwork, bureaucracy. Each is a point where one can say no. This can be called the administrative burden of healthcare. It consists of work that is almost always boring but sometimes causes enormous and unnecessary human suffering.
The administrative burden includes many of the tasks we all hate: calling doctor’s offices, lining up referrals, waiting in the emergency room, sorting out bills from recent surgery, checking prescription refills.
On a recent average Wednesday, I saw several patients who were unable to obtain critical supplies or medications, or missed appointments due to the administrative burden. One of them took a valuable morning off work to ferry documents between the Medicaid office and her pharmacy to prove that she did not, in fact, have alternative insurance, and therefore her diabetic supplies should be covered. A package of glucose test strips cost her a small co-pay – and probably lost most of a day’s wages. That’s even cheaper than a hospital stay for a diabetic coma, depending on who’s paying.
There is a general understanding that the amount of unpaid labor required to obtain medical care is increasing. This is partly due to rising health costs, health plans have tried to find incentives to direct treatment to reduce costs. These incentives can be a vital part of cost management in a country he spends about twice as much on health care, as a percent of their economy, as other high-income countries.
Sometimes the administrative burden is the result of a good faith effort to help patients. For example, if medical leadership imposes a well-meaning rule to try to make the best use of clinic resources, some patients may be delayed. Sometimes a pharmacy wants to help a patient avoid a large bill, but doing so requires a long back-and-forth with the clinic staff and the insurance company.
At the same time, creating an 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, 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 take the burden on patients into account, so it doesn’t factor into policy decisions. No one is measuring the amount of time spent on the phone plus lost wages and complications from delayed care for every single patient in the United States. Recently study co-authored by Michael Anne Kyle, a research fellow at Harvard Medical School, found that about a quarter of insured adults reported that their care was delayed or lost entirely because of administrative tasks.
This burden falls on the least resourceful: vulnerable people such as cancer patients, those with complex medical conditions or those with a chronically ill child. I have noticed that this burden splits along racial, ethnic, and socioeconomic lines. These tasks are more difficult for those who have hourly jobs, do not have English as their first language or cannot read complex documents easily. For many Medicaid patients, it is even possible to enroll or remain enrolled in their insurance coverage additional working hours to late care.
For some patients, such delays lead to serious consequences – and increased costs for the entire system. For my patient, due to the days of waiting for an antibiotic, the easily treated UTI turned into a more serious infection that required a long hospital stay and could have cost us a very early baby, with lifelong costs. That is clearly not the way to save money.
There are several possible solutions. Dr. raised. Kyle floated the idea of simplifying the paperwork required by healthcare, 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 provide a care coordinator in rare cases for some patients with certain high-cost 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 is not easily billable – it is more difficult and less lucrative to get reimbursed for care coordination and filling out forms than it is for delivering babies and doing ultrasounds, even though the time spent may be the same and the need just as acute. Until this work is universally billable, support for this solution will be limited.
One of the first steps in any comprehensive solution would be a proper account of the costs of the administrative burden. Perhaps we in the medical system need to start counting 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 is no more difficult than doing the work itself, as patients do.
My patient with the kidney infection stayed in the hospital for several days on IV antibiotics. Her vital signs improved and her contractions stopped. On the day of her discharge, she asked us to stop taking out the IV. She was only willing to start her discharge once she had her outpatient prescription, those antibiotic pills, in her possession. She said she trusted us, the medical staff at the hospital. She felt we saved her life and kept her baby safe. She wasn’t sure she could trust the rest of the system to do the same.