Hassle Of Being A Patient Can Turn Into A Crisis Without Sick Leave | KERA News

Hassle Of Being A Patient Can Turn Into A Crisis Without Sick Leave

Jul 11, 2016
Originally published on July 11, 2016 9:39 am

Here's a typical scenario when you have a medical problem. You go to your doctor's office, then have to run across town to a lab for a blood test and then you also have to get an appointment for an X-ray or MRI. There's a good chance this will all require a phone call — or a lot of phones calls — with your insurance company.

It's a hassle and it's time-consuming.

But for many people it's even worse than that.

That's because about a third of working adults say their jobs don't come with paid sick leave, according to results from the latest poll by NPR, The Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health.

And for some of those people, taking care of their health needs can lead to a financial crisis.

Take Valerie Hesse, a catering chef in New Orleans. "I've had allergies — pollen and dust and everything else — since I was a kid," she tells Shots. "Over the years it got to the point where I was having frequent sinusitis, sinus infections, occasional bronchitis."

Hesse went to the doctor a lot to deal with sinus and ear infections. She tried to schedule the appointments around her work hours, and sometimes her doctor would give her a break and prescribe antibiotics over the phone.

But sometimes she'd be called in at the last minute. Or she'd have to work an extra shift.

"I had to reschedule, postpone, skip," she says. "I wasn't gonna get paid and you gotta work."

Over time, the constant congestion and infections were damaging her hearing, so last year Hesse decided to have surgery to fix the problem. Recovery took weeks.

By the time she was able to get back to work, she had a reputation as sickly and unreliable.

"The owner of the company told me that he had decided to make a management change," she says. "I was let go."

Hesse is now living off savings as she makes plans to open her own catering business. She says she needs to be her own boss to be able to take care of herself.

Our poll found that 32 percent of people in the U.S. are like Hesse. They don't get any paid sick days. And 24 percent have no paid vacation time.

So unless they work odd hours, people without either benefit lose income if they want to take care of their health.

That's a real problem, but it's not the only consequence of what Dr. Victor Montori of the Mayo Clinic refers to as the "work" of being a patient.

He says the health care system is designed for the convenience of doctors — and the result is that patients find themselves running to doctor's offices, labs, imaging centers and back, often carrying their records along with them.

"That is not an organization of care that started by thinking, 'How do we meet the needs of the patients?' " Montori says.

The current setup was created at a time when people saw a doctor for an injury or infection. By contrast, today most people by middle age are dealing with a chronic condition that requires regular care.

So, like Hesse, they have to fit health care into their daily lives. And the system that requires a patient to leave work, go to the doctor, go elsewhere for tests and then go to a pharmacy, isn't very useful, Montori says.

"For people with chronic conditions, the health care system is blind to their context," Montori says. "In particular, it's blind to the work of being a patient and the capacity that people have to shoulder that work and make it happen."

And if patients don't do everything right — if they don't get their tests, or refill their medications on time, or go to follow-up appointments — they are deemed by the health care establishment to be "noncompliant," he says.

"We just decide that it's the character of the patient that is to blame and move on," Montori says. "Rather than reviewing our own behavior as a health care system and see how is it that we have created so much work for people that they no longer can do it."

Montori and his colleagues are now reviewing that behavior and trying to determine how to make the health care system more responsive. One approach is to put health care providers in schools and workplaces and to make them available during evenings or weekends.

"Once we start thinking about meeting the needs of people, the first thing we say is, 'Where are these people, and how can we start thinking about meeting their needs where they are?' " Montori says. "Can the kid not get the asthma care at school? These kids are at school for hours and hours and hours."

Many doctors say it's not just the system they created that is complicated. It's also complex rules imposed by Medicare and insurance companies that make being a patient harder.

"You can't do multiple procedures at the same time or on the same day without having the second procedure's payment cut," says Kristine Longshore, an ophthalmologist in Doylestown, Pa.

If she wants to operate on both eyes of a patient, she'll be paid less if she does both eyes at the same time than on different days.

Sometimes, she says, she's not allowed to do two procedures on the same day at all.

"I cannot image the optic nerves and macula on the same day even if the patient happens to have both glaucoma and macular degeneration," she says. If she does, Medicare won't pay for one of them.

"And that's a real hardship for patients. They may have to have the right eye treated and come back the following week to have the left eye treated," she says.

Longshore says insurers, including Medicare, are already cutting payments to doctors. With their incomes shrinking, doctors may be reluctant to earn even less by doing two procedures at the same appointment.

It's those sorts of insurance practices that make getting health care cumbersome for Tammy Davenport, who lives outside Houston.

She recently needed an MRI to determine why a year-old ankle injury wasn't healing properly. Davenport has hemophilia, a disorder where people bleed excessively, often into their joints.

Last year she fell down some stairs and landed on the ankle. She ended up in the emergency room and could barely walk for a month. Now, 15 months later, she was still in enormous pain, so she went to her doctor and he ordered the test.

"It took me eight hours on the phone, one full day of work, to get an appointment for an MRI within 15 to 20 minutes from our house," she says.

To control costs, Davenport's insurance company requires an outside contractor to approve the doctor's authorization for the test. A second contractor then schedules the test. That company works with only three MRI centers, and all of them were more than 90 minutes from her home.

Davenport says there were several within a few miles on her insurance company's website, but the company refused to work with them. After hours calling different people — all while she was supposed to be working — she got the appointment.

"Its all just a random phone tag that you have to go through just trying to get an answer to a question," she says.

But there are signs of change. The health care system is shifting in ways that may make things easier for patients, says Gail Wilensky, an economist who was head of Medicare and Medicaid under the first President Bush.

She says doctors are leaving behind individual practices and joining health care groups that combine specialties and services under the same roof. "The general move toward better integration of care can be a major improvement and convenience for the patient," she says.

But that transition will take time. It requires doctors and health systems to rethink how they've been doing their work for decades.

In the meantime, people like Hesse will continue to have to choose between getting healthy and getting paid.

Copyright 2017 NPR. To see more, visit http://www.npr.org/.

STEVE INSKEEP, HOST:

Today in Your Health, the frustrations of gaining access to health care. This isn't about being able to afford it, just being able to get it. A typical scenario goes like this - you go to the doctor's office. Then you run across town for a blood test. Then, maybe, you also need an X-ray or an MRI.

RENEE MONTAGNE, HOST:

There's a good chance this will all require a phone call to your insurance company. But for many people, there's a catch. About a third of working Americans say they don't get paid leave to do any of this. That's according to a new poll out this morning from NPR, the Robert Wood Johnson Foundation and Harvard's T.H. Chan School of Public Health. And as NPR's Alison Kodjak reports, without paid sick days, the inconvenience of the health care system can turn into a crisis.

ALISON KODJAK, BYLINE: Tammy Davenport needed an MRI.

TAMMY DAVENPORT: I couldn't walk. I couldn't do anything. I was not really working the way I should've been working.

KODJAK: About 15 months ago, she injured her ankle in a fall. Davenport has hemophilia, a disorder where people bleed excessively, often into their joints. She ended up in the emergency room - could barely walk for a month. Now, more than a year later, the ankle still hadn't healed properly. So she went to a doctor, and he ordered the test.

DAVENPORT: It took me eight hours on the phone, one full day of work, to get an appointment for an MRI, you know, within 15 or 20 minutes of my house.

KODJAK: Why did it take so long? You see, to control cost, Davenport's insurance company set up a system where an outside contractor schedules the test. The company insisted on making the appointment at a center that was 90 minutes from her home, even though its website listed several much closer. It's just one example of the time and energy people with chronic conditions can spend dealing with the health care system. Davenport has to care for herself and her son, who also has hemophilia.

DAVENPORT: It's hours. It's a full-time job. Yes, it is.

KODJAK: That work and hassle of being a patient is exactly what Victor Montori of the Mayo Clinic studies. He says the health care system is designed for the convenience of doctors. And the result is that patients find themselves running between doctors' offices, labs, imaging centers and back, often carrying their records along with them.

VICTOR MONTORI: That is not an organization of care that started by thinking, how do we meet the needs of the patients?

KODJAK: And if patients don't do everything right - if they don't get their tests, or refill their medications on time, or go to follow-up appointments - they are deemed by the health care establishment to be non-compliant.

MONTORI: We just decide that it's the character of the patient that is to blame, and we move on, rather than reviewing our own behavior as health care system and see how is it that we have created so much work for people that they no longer can do it.

KODJAK: So what would a health care system that caters to the patient look like? It would be available in the evenings or weekends, Montori says. There would be clinics in schools and near workplaces. Records would be easy to get and keep. Instead, patients miss work or spend their working hours dealing with health care logistics.

Tammy Davenport's employer gave her time off to deal with her medical problems. But not everyone is so lucky. Our poll found that 32 percent of people in the U.S. don't get paid sick days from work. And 24 percent have no paid vacation time. So unless they work odd hours, many of those people lose income if they want to take care of their health. Valerie Hesse, a catering chef in New Orleans, is one of them.

VALERIE HESSE: I've had allergies to pollen and dust and everything else since I was a kid. Over the years, it got to the point where I was having frequent sinusitis, sinus infections, occasional bronchitis.

KODJAK: Hesse was at the doctor a lot to deal with those sinus and ear infections. She tried to schedule the appointments around her work hours. And sometimes her doctor would give her a break and prescribe her antibiotics over the phone. But it didn't always work out.

HESSE: There were some times where I had to reschedule, postpone, skip. Yeah, I wasn't going to get paid. And you got to work.

KODJAK: The constant congestion and infections were damaging her hearing. So last year, Hesse finally decided to have surgery to fix the problem. The surgery itself wasn't bad, but the recovery took weeks.

HESSE: Especially down here in the culinary field, if you miss work for any reason, you're seen as unreliable.

KODJAK: By the time she got back to work, the damage was done.

HESSE: The owner of the company told me that he had made a management change in the culinary department. And I was - I was let go.

KODJAK: She's now living off savings as she makes plans to open her own catering business. While the lack of sick leave is a real problem, many doctors say complicated rules imposed by Medicare and insurance companies are making it worse. For example...

KRISTINE LONGSHORE: You can't do multiple procedures at the same time or the same day without having the second procedure payment cut.

KODJAK: Kristine Longshore is an ophthalmologist in Doylestown, Pa. She says if a patient needs an operation on both eyes, she, as the doctor, is paid less if she does both at the same time than if she does them on different days.

LONGSHORE: And that's a real hardship for patients. They may have to make one visit to have the right eye treated and come back the following week to have the left eye treated.

KODJAK: Longshore says insurers, including Medicare, are already cutting their payments to doctors. So their incomes are already shrinking. That's why doctors may be reluctant to earn even less by doing two procedures at the same time. But the health care system is beginning to change. And Gail Wilensky says those changes may make things easier for patients. She's an economist who is head of Medicare and Medicaid under the first President Bush.

GAIL WILENSKY: We are in flux as a country in terms of delivery systems.

KODJAK: She says doctors are leaving behind individual practices and joining health care groups that combine specialties and services under the same roof.

WILENSKY: The general move toward better integration of care can be a major improvement and convenience for the patient.

KODJAK: But that transition will take time. It requires doctors and health systems to rethink how they've been doing their work for decades. And in the meantime, people like Valerie Hesse will continue to have to choose between getting healthy and getting paid. Alison Kodjak, NPR News. Transcript provided by NPR, Copyright NPR.