Reinventing American Health Care

How the Affordable Care Act Will Improve Our Terribly Complex, Blatantly Unjust, Outrageously Expensive, Grossly Inefficient, Error Prone System

by Ezekiel J. Emanuel

Hardcover, 380 pages, Perseus Books Group, List Price: $26.99 | purchase

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Title
Reinventing American Health Care
Subtitle
How the Affordable Care Act Will Improve Our Terribly Complex, Blatantly Unjust, Outrageously Expensive, Grossly Inefficient, Error Prone System
Author
Ezekiel J. Emanuel

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NPR Summary

A health policy expert explains the American health care system and five problems that work against any attempts to reform it and discusses how the Affordable Care Act was passed and how it will positively affect future health care.

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Excerpt: Reinventing American Healthcare

Introduction

Erin's Disease

Erin is unlucky.

Truly American, Erin says that despite her hardships, "she is the luckiest [woman] on the face of the earth"; that she "might have been given a bad break, but she has an awful lot to live for."

Erin, who comes from a large, East coast Irish family, arrived in Aspen, Colorado, one winter to visit her brother, who was taking some time off between college and graduate school. She fell in love with the place and remained for the next 23 years. She also fell in love with Justin, an accomplished mountaineer whom she married in 1999.

Justin and Erin made a good life together. He worked each winter as a ski patroller on Aspen Mountain. She started a marketing company and was self-employed. In 2000 Erin gave birth to their first daughter. Three years later they had their second.

Erin and Justin had the usual struggles of a young couple raising 2 children — finding affordable housing; expanding the hours in the day to accommodate the children, friends, work, themselves; keeping in touch with family out east.

But they also felt blessed. They lived healthy, active lives amid the beautiful scenery of Aspen. They hiked and biked and skied together as a family. And they formed close friendships.

They rarely needed to worry about their health or engage the health care system. Everyone ate a healthy diet. They were physically active. Neither Erin nor Justin smoked. Neither had any chronic condition nor took medications regularly. The girls did not have allergies, asthma, or any other childhood health problems. Besides 2 C-sections for the girls, no one had been admitted to the hospital.

Then tragedy struck. A few days before Christmas in 2008, Erin and Justin had an amazing morning skiing together. Two feet of fresh powder had fallen the previous night. Skiing conditions could not have been better. After lunch Erin left to meet their children, and Justin went back out to ski, alone this time, heading for his favorite, almost secret spot on the backside of Aspen Mountain. It was an area he had skied hundreds of times previously. Despite a promise to be home in a couple of hours, Justin never returned. A nighttime search of the mountain found his frozen body, buried in a freak avalanche 100 yards wide and 3 feet deep. The coroner's report concluded that Justin had died almost instantly of blunt force trauma, a result of hitting a tree and being buried under the snow.

With the support of her parents and her Aspen friends, Erin carried on as a single mother of 2 young daughters. Over the next few years she recovered from Justin's death. She began living her life again. Her daughters were recovering too. Her marketing business was thriving. They were still a healthy family.

In 2013 tragedy struck again. In March Erin and the girls went to Mexico with friends for a spring vacation. A few of the people on the trip got Montezuma's revenge that lasted for a day or 2. Erin did not experience any problems. But after being home 2 weeks she began to have severe abdominal cramping, followed by bloody diarrhea. Because of the blood, Erin went to her family physician. Once she heard Erin had been in Mexico, the physician thought it might be a bacterial infection. She ordered some stool cultures. Erin tested positive for a Campylobacter intestinal infection. She was treated with some antibiotics.

The cramps subsided and the diarrhea resolved. After she finished the treatment Erin did not feel great, but she seemed to be recovering. About 2 weeks later, however, the cramps returned. Erin's physician thought the medicine may not have gotten all the infection or that she may have developed a secondary infection. So they tried a combination of 2 additional antibiotics that would kill "90% of anything that was there."

It didn't work. Instead, Erin was getting worse. And then she felt a mass-like something in the lower part of her abdomen.

It was clear to Erin that something was wrong. On May 9 she went to the emergency room of the small Aspen Valley Hospital. The health care team was still focused on the possibility of an infection. They ordered a CT scan. While Erin was waiting for the CT results a nurse asked her whether there was anything she needed. Not having had anything to eat or drink all day, Erin asked for some water. After Erin had taken just

2 sips of the water, the nurse rushed back into the room and took the water away. "The doctor is coming to see you," she said.

Clearly something was wrong, seriously wrong. The ER physician said that Erin had a large section of "telescoping colon." Technically that is an intussusception in which one part of the colon swallows or overrides the other. Though regularly seen in younger children, this is very rare in adults. In the report the radiologist reading the CT wondered whether some fat bulge might be causing this telescoping. The ER physician said the intussusception could cause serious problems, strangulation of the colon and perforation, and that it had to be dealt with by emergency surgery in the next 20 minutes.

Trying to keep her head, Erin asked whether the surgery could be done laproscopically. Could the doctors wait to get a second opinion? Maybe send her to Denver for such a serious operation? But no other surgeon was available for a second opinion; indeed, the surgeon on call was not an Aspen hospital physician but rather a visiting surgeon from

Maryland. The surgeon thought it was an emergency because they could not see what was wrong and a large stretch of colon was involved. He told Erin he felt it was imperative that he get in and operate immediately to investigate what was causing this telescoping and deal with the problem, hopefully before any serious damage was done to the colon tissue.

Erin, feeling that the situation was quite out of her control, had to "pretty much release myself to the medical team and trust that they were going to take good care of me." She went into surgery.

The next thing she remembers is groggily waking up in the recovery room. "I was later told that the surgeon had explained what he had found, but I don't remember any of that," she said. "I overheard someone saying something about cancer. I pulled over the surgical nurse. I looked at him and asked him, 'Are they saying I have cancer?' Poor guy. He was the one who had to tell me."

Erin was shocked. Neither the emergency room physician nor the surgeon had focused on cancer as a possibility. While dodging a perforation, Erin had suddenly become a cancer patient. "The surgeon thought I would need 6 months of chemo and suggested that I should 'prepare' myself and my children. I had no idea where I would find the strength and what it was going to do to my children, who had already been through so much loss at just 12 and 9 years old. I was trying to process all this as a single mom."

Fortunately, Erin's support structure kicked into place again. Her mom was on a plane from New Jersey 24 hours later. Her friends took care of the children and lined up meals. "In these resort communities, where people live far from their relatives, they quickly find other people who become their circle of friends, their extended family," Erin observed. "It is a very supportive community, and I have a lot of close friends. I couldn't keep them out of my hospital room. I am not alone in Aspen."

Nevertheless, Erin says, "I never felt so all alone in all my life, including after my husband died. It was a really" she trails off for a long time, as though the moment is returning to her, then mumbles, "a very tough time."

From Reinventing American Healthcare by Ezekiel J. Emanuel. Copyright 2014 by Ezekiel J. Emanuel. Excerpted by permission of Public Affairs.