Several years ago, I was urgently called to our small obstetrics trinity 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 dangerously low, and her oxygen levels were barely normal. In sentences broken by gasps for air, she told us her belly tightened 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 swarmed the third bay — providing oxygen, applying the fetal heart rate and contraction monitor, placing IVs. I called the neonatal intensive care unit in case the labor progressed, to prepare for a very premature baby. In less than an hour, we had more than a dozen people, part of a powerful medical system, working to get her everything she might 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 an antibiotic prescription. But the pharmacy wouldn’t fill it – something about her insurance, or a mistake with her record. She tried to call her doctor, 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, massive, powerful, able to assemble a team in less than an hour and ready 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 drug to prevent any of that.
This patient’s story is a result of the space between the care providers want to give and the care 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 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 doctors, lining up referrals, waiting in the emergency room, sorting bills from recent surgery, checking prescription refills.
On a recent average Wednesday, I saw several patients who were unable to obtain crucial supplies or medications, or who missed appointments due to administrative burden. It took a precious morning 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 diabetes supplies should be covered. A pack of glucose test strips cost her a small co-pay — and probably most of a day’s lost wages. That’s still cheaper than a hospital stay for a diabetic coma, depending on who pays.
There is a general feeling that all that unpaid work required to get medical care is increasing. This is in part because as health care 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 percentage of its economy, like other high-income countries.
Sometimes administrative burden is the result of a good faith effort to help patients. For example, a well-intentioned rule of medical guidance to try to make the best use of clinical resources may add delays for some patients. Sometimes a pharmacy wants to help a patient avoid a big bill, but doing so requires a long back-and-forth with clinic staff and the insurance company.
At the same time, creating an administrative burden is a premature tactic for insurance companies. “When you’re trying to incentivize things, and you don’t want to raise the dollar cost, you can raise 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 calculate the burden on patients, and so it doesn’t factor into policy decisions. No one measures the time spent on the phone plus lost wages and complications from delayed care for every patient in the United States. fresh to study co-authored by Michael Anne Kyle, a research associate at Harvard Medical School, found that about a quarter of insured adults reported that 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 such as cancer patients, those with complex illnesses or those with a chronically ill child. I have observed that this burden breaks down along racial, ethnic, and socioeconomic lines. These tasks are more difficult for those who have hourly jobs, who do not speak English as a first language, or who cannot 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 delayed concern.
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 UTI into a more serious infection that required prolonged hospitalization and could have given us a very premature baby, with attendant lifelong costs. That is clearly not the way to save money.
There are a number of possible solutions. Dr. Kyle raised the idea of simplifying the paperwork that healthcare requires, for example, requiring all companies to use a universal form for drug approvals.
Another idea would be to follow the lead of private insurance companies, which in rare cases provide a care coordinator to some patients with certain high-spending 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—reimbursing for care coordination and filling out forms is more difficult and less profitable than for things like delivering babies and performing ultrasounds, even though the time spent may be the same and the need just as acute. Until this work is more universally billable, there will be limited support for this solution.
One of the first steps towards any comprehensive solution would be a true accounting of the costs of administrative burden. Maybe 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 that the healthcare industry is used to evaluating. But it is no more difficult than doing the work yourself, 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 her discharge day, she asked us to stop taking her IV. She wanted to start her discharge only after she had her outpatient prescriptions, those antibiotic pills, in her possession. She said she trusted us, the medical team at the hospital. She felt we 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.