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Mon May 21, 2012
Your Stories Of Being Sick Inside The U.S. Health Care System
Originally published on Mon May 21, 2012 8:42 pm
To get a feeling for what being sick in America is really like, and to help us understand the findings of our poll with the Robert Wood Johnson Foundation and the Harvard School of Public Health, NPR did a call-out on Facebook. We asked people to share their experiences of the health care system, and within 24 hours, we were flooded with close to 1,000 responses.
The stories, often lengthy and detailed, echoed what our poll found: Americans with recent firsthand experience of the U.S. medical system are more likely than the general public to say there are serious problems with the cost and quality of care.
From Oregon to Florida and Maine to Mississippi, Facebook respondents told wrenching tales of bankruptcies, missed diagnoses, medical errors, miscommunication and treatment that was delayed or foregone because of its cost.
Take Aimee Snyder, a 28-year-old graduate student at the University of Arizona. She got preoccupied with choosing her courses and missed the sign-up deadline for health insurance by one day. Then she started having leg pains and shortness of breath.
"My leg swelled up to double the size and turned purple," Snyder says. But she didn't seek care because she couldn't imagine how she'd pay the emergency room bill. After hobbling around in pain for several days, she discovered she could get a discount on her hospital bill and went to the ER.
Doctors found an extensive blood clot in her leg, with pieces breaking off and going to her lungs. She could have died within hours. Luckily, she's fine, but she's had to pay more than $15,000 in bills so far, and she's had to borrow from her family and use student loan funds to pay them.
The new poll finds that 43 percent of people with recent illness ended up with serious financial problems.
Sometimes, medical bills are higher than they need to be. Andrew Dasenbrock of Salt Lake City recently had to pay twice for much of his care. He's 32, a self-employed IT consultant who says he can't afford health insurance.
It started when he woke up one night with alarming stomach pain — "like shards of glass traveling through me," he says. Doctors at a nearby urgent care center ran a bunch of tests but couldn't figure out what was wrong, so they sent him to the hospital.
Even though the hospital was part of the same system, the doctors there weren't alerted that Dasenbrock was coming and his records weren't transferred. So he had to fill out the same questionnaires and repeat all the same diagnostic tests, as he was doubled over in pain.
A CT scan showed a nonserious ailment that needed only simple treatment — lots of fluids — and Dasenbrock went home. But two days later he got two bills totaling thousands of dollars.
"I laid the two bills next to each other and it was literally word for word, letter for letter and line item by line item the same charges ... for all the tests I had gone through," Dasenbrock says. He ended up having to pay for the duplicate tests.
Just as in the poll, the cost of care was a big problem for many Facebook users who contacted NPR. And often they reported ruinous financial problems.
Marty Clear is one case. He's a 60-year-old freelance writer in Tampa who can't afford health insurance. "If I make $400 a week, it's a really good week," he says.
He went to the emergency room for a problem and doctors found something unrelated: an enormous tumor on his kidney. It turned out to weigh 8 pounds.
"I was treated at one of the best cancer hospitals in the country, but I know I'll never have any money again," Clear laments. "I'm never going to be out of debt for this."
Clear has sold his car and he skips meals to save money. He feels he'll never be able to pay off medical bills, which may total $200,000. The worst part, he says, is the guilt.
"I feel awful every single day," he says. "You know, people saved my life. And more than that — people fed me and bathed me and changed my socks, you know? And they're not going to get paid — at least they're not going to get paid by me. And I'm going to be ashamed of that for the rest of my life."
There were hundreds of stories raising questions about the quality of care people got. Many were too complicated to recount briefly, and difficult to verify in any objective way. But the level of detail and thoughtfulness of many responses makes it clear things did not go the way they should.
A major theme was miscommunication among caregivers. Jacki Bronicki, a medical librarian at the University of Michigan, tells of the frustration she felt about the treatment received by her father, 80-year-old Douglas Harlow Brown, who has Parkinson's disease.
Last year he fell and broke three ribs. He was admitted to the hospital, and his mental state began to deteriorate by the second day. "He wasn't even coherent by the third day," Bronicki says.
Brown, a retired engineer who taught physics, was mentally fine before the hospitalization, Bronicki says. So it wasn't normal for him to be so confused.
But she says the parade of doctors who saw him seemed to assume "that was his natural state, given his age and condition. We would have to convince each new doctor that saw him — tell the story of his Parkinson's, explain that this was not his normal, that he was normally functioning, talking, coherent."
A neurologist finally figured out what was wrong. Different doctors had prescribed different pain medications, and the drugs were interfering with Brown's Parkinson's medication. That caused his mental deterioration and made his limbs rigid.
After the medication was straightened out, Brown improved. But Bronicki and her sisters felt they had to maintain a constant vigil at his bedside to prevent another medication error.
And now Bronicki regrets that she ever took her father to the hospital in the first place. After all, there's no specific treatment for broken ribs, which must heal by themselves.
"He has a lot more dementia than he had a year before," she says. "He can't walk anymore. And I'm not sure if it would have normally progressed like this, or if we really sped it up."
Among many stories like this, there were some from people who think the quality of their care is fine.
Liz Gubernatis of Saint Joseph, Mo., says she's been "astonished at the supportive, cohesive care" she has gotten since she was diagnosed recently with diabetes.
"I've been scared, but educated," she writes, "cried, but consoled, and cheered on by a team of amazing doctors, nurses and patient-care folks. Being sick in America isn't all doom and gloom."
According to the new poll, one in four people with recent illness say the quality of care is not a problem for this country. That's not exactly a ringing endorsement.
And even though nearly half of poll respondents say they're very satisfied with the quality of care they get, that leaves lots of room for improvement.
STEVE INSKEEP, HOST:
It's MORNING EDITION from NPR News. I'm Steve Inskeep.
RENEE MONTAGNE, HOST:
And I'm Renee Montagne. Good morning.
Today in Your Health, we're looking at what it means to be sick in America. NPR conducted a poll along with the Robert Wood Johnson Foundation and the Harvard School of Public Health. It found that people who've recently been sick are more likely to report big problems with the U.S. health care system than the general public. NPR health correspondents Patti Neighmond and Richard Knox talked to many people whose experience reflects the poll results.
PATTI NEIGHMOND, BYLINE: Our poll is one of the very few focusing on people who've actually been seriously ill in the past year.
RICHARD KNOX, BYLINE: And it turns out they have a different view of the U.S. health system. Three out of four say the cost of care is a very serious problem.
NEIGHMOND: And nearly half say the quality of care is also a very serious problem. This is important because a bigger proportion of sick people feel this way than people who aren't sick and they say the problems have gotten worse over the past five years.
KNOX: Now, poll numbers can point to problems. But we wanted to get a feeling for what being sick in America is really like. So we did a call-out on Facebook asking people to share their experiences. In the first 24 hours, we were flooded with close to a thousand responses.
NEIGHMOND: They were articulate and heartfelt, and often lengthy. We read every single one of them. And the picture they painted was depressing. From Oregon to Florida, Maine to Mississippi, we heard stories of bankruptcies, missed diagnosis and medical errors.
KNOX: And stories like these really back up what our poll found. Take Aimee Snyder. She's a grad student in Tucson. She got preoccupied with lining up her courses and missed signing up for health insurance by one day. Then she started having pains in her legs and shortness of breath.
AIMEE SNYDER: My leg swelled up to double the size and it turned purple and I just - I couldn't walk anymore. I couldn't even stand straight.
KNOX: But she didn't seek medical care because she was afraid of how much it would cost.
SNYDER: I could not fathom, you know, carrying around that kind of debt that would come from going to the emergency room.
KNOX: Finally, several days later, she did go to the ER. After she found out she could get a discount on her hospital bills because she was uninsured. The doctors found an extensive blood clot in her leg. Pieces of it were breaking off and going to her lungs. She could have died within hours or been crippled for life.
NEIGHMOND: Fortunately, she's fine. But she's had to pay $15,000 so far and the bills keep coming.
SNYDER: I owed money all over the place. I owed $3,000 to the vascular surgeons and, you know, money to the emergency room people and I owed money to the CT people.
KNOX: So have you paid off what you think you owe at this point?
SNYDER: Well, I have put it on my student loans. So I have deferred it for another 10 years.
KNOX: She's using her student loan to pay off her medical bills.
NEIGHMOND: Our poll says that more than 40 percent of people with recent illness ended up with serious financial problems. Andrew Dasenbrock is 32 and self employed. He says he can't afford health insurance. He pays his medical bills with his credit card. Recently he had to pay twice for much of his medical care. It started one night when he woke up with excruciating pain in his stomach.
ANDREW DASENBROCK: I started feeling a very intense and unique tearing sensation, like shards of glass were traveling through me and just tearing open every square inch.
NEIGHMOND: He went to the nearby urgent care center. After a number of tests, doctors couldn't figure out what was wrong. So they sent him to the hospital.
DASENBROCK: I arrive at the hospital and they had absolutely no idea I was coming.
NEIGHMOND: The hospital was part of the same system as the urgent care center. But records weren't transferred. Doctors weren't alerted. And even though he was doubled over, literally crying in pain, he had to fill out all the same paperwork and repeat all the same tests.
KNOX: Eventually a cat scan showed Dasenbrock's intestinal tract was inflamed. The treatment was simple lots of fluids. He was sent home. Two days later he got two bills in the mail.
DASENBROCK: I lay the two bills next to each other and it was literally word for word, letter for letter, line item by line item the exact same charges on the two separate invoices for all the tests that I had gone through.
NEIGHMOND: Money is a big problem for people who are sick, both in the poll and among those who contacted us on Facebook.
KNOX: Reading hundreds of these stories, one after another after another, really makes it plain what's going on. Marty Clear is an example. He's a 60-year-old freelance writer in Tampa who doesn't have health insurance.
MARTY CLEAR: I cannot afford it. If I make $400 a week, it's a really good week.
KNOX: He went to the emergency room for a problem and they found something unrelated - an enormous tumor on his kidney. It turned out to weigh eight pounds. Fortunately, Marty Clear got really good care.
CLEAR: I was treated at one of the best cancer hospitals in the country. But I know I'll never have any money again, you know. Any extra money I have will go to pay off one bill or another. I have no idea how to decide which bill to pay when I do have some money. But I'm never going to be out of debt for this.
KNOX: He's sold his car. He skips meals to save money. But the worst part is the guilt.
DAVID GREENE, HOST:
I feel awful every single day. You know, people saved my life. And did more than that - people fed me and bathed me, and changed my socks, you know? And they're not going to get paid - at least they're not going to get paid by me. And I'm going to be ashamed of that for the rest of my life.
NEIGHMOND: But it's not just about cost. In both our poll and in the Facebook responses, we found a whole other set of people who feel let down by the quality of the care they got.
KNOX: Yes, in the poll, about half of those who had been sick say there were problems with the quality of their care. Many who responded to our Facebook post had devastating experiences. There were unexpected deaths and permanent disability that might have been avoided through better communication among caregivers.
NEIGHMOND: Like Jacki Bronicki's father, Douglas Harlow Brown. He's 80 years old and has Parkinson's disease.
Last year he fell, broke three ribs and was admitted to the hospital.
JACKI BRONICKI: After the second day, his mental state, he was barely functioning. He wasn't even coherent by the third day.
NEIGHMOND: Bronicki says the important thing to know is that her father was mentally fine before the hospitalization - a retired engineer who taught physics. She says it just wasn't normal for him to be so confused. Most frustrating, there was no one doctor in charge.
BRONICKI: When doctors would come in they would assume that was his natural state given his age and condition. We would have to convince each new doctor that saw him - tell them the story of his Parkinson's, but that this was not his normal - he was normally functioning, talking, coherent.
NEIGHMOND: Different doctors prescribed different pain medications. A neurologist finally figured out what was going on. The pain meds were interfering with Brown's Parkinson's medication, which affected his mental status and made his limbs rigid.
KNOX: An antidote was prescribed and Brown improved. But Bronicki and her sisters felt they had to stay at his bedside 24/7 to avoid another medication error. And now she regrets even taking her father to the hospital in the first place.
BRONICKI: Well, he has a lot more dementia than he had a year before; he's almost in a wheelchair because he can't walk anymore, and like I said, I'm not sure if it would have normally progressed like this or if we really sped it up.
KNOX: We heard from many people with stories like this. But we also heard from some people who think the quality of care is fine. Liz Gubernatis of Saint Joseph, Missouri, says she's been astonished at the supportive, cohesive care she's gotten since she was diagnosed, recently, with diabetes.
NEIGHMOND: I've been scared, but educated, she writes, cried but consoled, and cheered on by a team of amazing doctors, nurses and patient-care folks. Being sick in America isn't all doom and gloom.
KNOX: In fact, according to our poll, one-in-four people with recent illness say that the quality of care is not a problem for this country. Still, that's not exactly a ringing endorsement. Clearly, there's lots of room for improvement.
NEIGHMOND: And over the next few days we'll be hearing more stories that reflect our poll results, showing what it's like to be sick in America.
I'm Patti Neighmond.
KNOX: I'm Richard Knox, NPR News.
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MONTAGNE: And you can read more stories in our Sick in America series at www.npr.org.
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MONTAGNE: you're listening to MORNING EDITION from NPR News. Transcript provided by NPR, Copyright NPR.