CHAPTER THIRTEEN

LOOKING FOR ANSWERS

In this marriage (at least for the past two decades of their forty-six years together), there was a clear division of labor: Nancy was in charge of the yardwork and flowers and Glenn was the fruits-and-vegetables man. Glenn planted apple, peach, and pear trees along with raspberries, blueberries, blackberries, and grape vines, plus enough tomatoes, green beans, and squash to feed the entire neighborhood and then some. As a science teacher, Glenn never lost his sense of wonderment about the environment. If there was an oddball pack of seeds that promised gourds with shapes resembling modern art installations, he’d be first to try them. Even when he became a principal, his first task upon returning home at the end of the day would be to walk the garden and see what needed to be pruned, harvested, or otherwise coaxed to life from the temperamental Kansas soil.

Glenn was also an enthusiastic woodworker, scrounging scrap wood or convincing construction workers to donate their leftovers so he could create toy cars and planes. Whenever the fruits of his woodworking and the fruits of his garden piled up, he and Nancy would haul the lot to a local farmers’ market to sell or even give away. “He just loved doing things for kids and working with wood,” Nancy, an elementary school teacher, told me. When their daughter Melissa was four, she requested a workbench for Christmas. Glenn fashioned a tiny one, complete with working tools to fit a four-year-old’s hands. (When Melissa asked for power tools the following Christmas, Glenn demurred. Those didn’t show up as a Christmas gift until Melissa was in college.)

Two minutes from Glenn and Nancy’s home was a sparkling, spring-fed lake, hemmed in by a 500-foot-long earthen dam that protected the downhill homes from being inundated with water. In rural Kansas, dam maintenance is left to the local communities, which must abide by state regulations and pass regular inspections, and Glenn was part of the homeowners’ association committee that cared for their dam. One of the challenges of an earthen dam is keeping out tree roots and local critters, both of whose burrowing will weaken the dam. To achieve this, the state encourages a “controlled burn” every year to clear away brush, trees, and by extension any animals who might view such fauna as prime real estate for family living.

On a late afternoon at the end of March, Glenn and his neighbors were preparing for the annual burn. Most had done this together for several years, though the prior year there’d been a moratorium on fires because of drought conditions. That moratorium meant that the underbrush was twice as thick this year. And it was all made worse by an outbreak of the invasive weed Johnsongrass, whose tenacious stalks can shoot up to seven feet tall and whose roots form an insidious underground network of botanical contagion.

An overflow pipe in the dam prevented the lake from spilling over, especially during heavy rains. The outflow from this pipe created a shallow stream on the dry side of the dam, toward the west end of the 500-foot embankment. It was near this stream that Glenn and his partner were tackling overgrown brush with gas-powered weed cutters. It was essential to clear the brush around the pipe so the fire wouldn’t edge too close and melt the liner of the pipe.

For a man in his late sixties, Glenn was in excellent shape. His gardening passion kept him outdoors and working his entire life, and he had no trouble mustering up the necessary elbow grease needed to wrestle the brush and manage the fire. The plan was for one team to start the main fire on the east end of the dam; this fire would move west and up over the dam into the lake. A backfire would then be started on the west end of the dam, closer to where the outflow pipe protruded. This fire would move east and up toward the top of the dam.

What happened next wasn’t exactly clear—Glenn later told Nancy that he thought the backfire had been started too soon—but the area near the stream ignited and flames shot up around the two men. Glenn’s partner was able to escape to the road that paralleled the dam. Realizing he couldn’t evade the fire, Glenn threw himself down into the tiny stream from the overflow pipe, immersing himself as best he could in the shallow water.

This strategy worked. When Glenn climbed out of the stream he knew that the left side of his face had been burned but that he was essentially okay. Glenn’s biggest frustration from all of this was that his glasses were missing by the time he pulled himself out of the stream. He dug around in the mud for a few minutes, but it was hopeless. He gave up and walked over to the road, climbing into the bed of his truck. One of the other men drove him the two minutes to home.

Glenn was a sooty, drippy mess at the door, and Nancy remembered that he looked like he’d just emerged from one of those 1950s swamp movies. Glenn’s first question was, “Do I have any eyebrows left?” She assured him that he did, but looking at his singed face, she suggested they ought to go to the hospital, just to get him checked out.

They agreed that Glenn should at least rinse off a few layers of soot first. Nancy helped peel off his muddy knee-high boots. Glenn put them in the garage so they wouldn’t mess up the house and then headed to the shower. When Glenn took off his soggy blackened clothes in the bathroom, he saw that his back was burned and blistered too. So post-shower, in his robe and slippers, he climbed into the passenger seat of their car and Nancy drove him to the local hospital ten minutes away. There were only two stop signs on the route, but Glenn told her not to stop.

“Stay here,” she said to Glenn when they arrived, and she hurried to the ER entrance to request a wheelchair. There wasn’t one readily available, but a young man in the waiting area offered to help. Before they could even get out the door, though, there was Glenn padding through the parking lot in his bedroom slippers and dark-blue robe with the gray trim. It was nearly 6:30 p.m., but the sky still wielded its afternoon brightness, thanks to daylight savings time.

The ER nurse quickly triaged Glenn. “He’ll most likely have to go to the burn center,” she said. Burn center sounded serious, Nancy remembered thinking. He’d probably have to be airlifted out of state to Denver or Dallas.

But when the ER doctor examined Glenn, he was more reassuring. “The burns aren’t bad enough to go to the burn center,” he told Nancy. “But we will admit him to our ICU.” Nancy, who was still dazed from all of the events, found tentative relief: things weren’t so bad. She wondered, though, whether Glenn would have any scarring on his face from the burns. But what a plus that he would be so close to home, not hours away in another state.

The local hospital was new, or at least the building was brand-new. The defining medical challenge for rural hospitals has always been attracting—and retaining—enough doctors. Far-flung sleepy towns can be a hard sell to doctors, who tend to congregate in the urban centers where they’d trained. So new medical facilities with high-end services such as ICUs were springing up, betting that these could entice doctors from the big cities.

This emergency room, like many ERs in small towns, was covered by a rotation of the hospital’s doctors. This model was, in fact, standard practice throughout the entire country before emergency medicine became a recognized medical specialty in 1979. Most larger hospitals are now staffed with full-time emergency medicine doctors, but rural hospitals have to make do with the old system.

Similarly, the ICU was not staffed by 24-hour critical-care specialists; it also relied on a rotation of doctors. In fact, the ICU had to be opened up to admit Glenn. It was already late in the evening when he arrived from the ER. While hooking up Glenn’s IVs, the ICU nurse turned to Nancy and said, “I’m going to try and get him transferred to the burn center.” That’s when Nancy learned that the burn center was only one hour away in Wichita, not out of state as she’d thought.

When burn victims come to medical attention they are assessed in two ways—severity of burns and extent of burns. Severity is determined by the depth of the burn in relation to the skin and underlying tissue: superficial (first-degree), partial-thickness (second-degree), or full-thickness (third-degree). Extent is determined by percentage of the body affected. The rule of nines is a quick way to roughly estimate the percentage of surface area burned—the arms and head are each 9% and the legs, chest, and back are each 18%.

The deeper the burns and the greater the percentage of the body involved, the more serious the situation is. Glenn had burns on parts of his face, chest, back, and abdomen. The initial estimate in the ER was that 30% of his body-surface area was affected and that these were second-degree (partial-thickness) burns.

The principles of burn treatment rest on four major pillars. The first is securing an airway, since smoke inhalation is highly toxic to the lungs. Additionally, the vast fluid shifts that take place after burns can cause airways to swell and close off. Severely burned patients are therefore usually intubated immediately and placed on a ventilator.

The second pillar is hydration, since skin is the major barrier that keeps our fluids inside of us. Patients with second- and third-degree burns always need fluids in order to maintain enough volume coursing through the blood vessels to keep the kidneys and brain functioning. But fluid management needs to be done with extreme care, since the inflammatory cascade set off by burn injuries makes the vessels “leaky.” Much of the IV fluid can end up pooling in the tissues if not carefully titrated. This is not only useless—in terms of getting blood volume to critical organs—it’s also harmful. Edematous, boggy tissue at the site of the burns impedes healing. It can also cause further skin breakdown, infection, and impaired circulation.

For these reasons, there are precise calculations for fluid administration that take into account body size and burn size, but then also shift over time to match the time course of the body’s inflammatory reaction. But even these exacting formulas are only estimates, as the hydration needs to be titrated to the realities of each patient. The fluids have to be adjusted individually for each patient to ensure that the flow is high enough for that patient’s organs to work (e.g., to get steady urine output from the kidneys) but also low enough to prevent excess fluid buildup near the burns and in the lungs. The complexity of fluid management is one of the primary reasons that burn centers were developed.

The third pillar of burn treatment is prevention of infection, since loss of skin is a floodgate invitation to all of our bacterial neighbors. Burns require exquisite care to avoid contamination and that care can never slip up, not even for a second. (You will likely never meet a more fanatically obsessive person than a burn-unit nurse in charge of dressing changes.)

The fourth pillar is pain management. Burns rank among the most painful of human experiences. Deeper burns may not be painful themselves because the nerves have been charred, but the dressing changes are notoriously excruciating. Some burn patients will tell you that they’ve considered suicide as a very reasonable option during their treatments, just to escape the pain.

That night in the ICU was a rocky one for Glenn. He was endlessly thirsty and kept asking Nancy for ice chips. But his blood pressure was falling, and his kidneys were struggling. He was on a host of medications, including antibiotics, steroids, opiates for pain, and anti-nausea meds. By the time pressors (the sledgehammer medications to boost blood pressure) were started, he’d stopped talking. When their local pastor came by for a visit just past midnight, he was no longer responsive.

In the morning, Glenn was transferred to the burn center in Wichita; Nancy arrived shortly thereafter. The doctor at the burn center was not one to mince words. He told Nancy three things right off the bat: “Glenn should have been transferred to the burn center immediately.” “He didn’t get enough fluids.” “I expect him to die before the day is out.”

For Nancy, this was almost impossible to comprehend. The evening before, Glenn had walked himself to the ER in his bathrobe. He’d been asking for ice chips in the ICU. Now he was expected to die before the day was out?

The doctor turned out to be correct on his first statement, largely correct on the second, and wrong on the third—though, sadly, not wrong enough. Glenn never regained consciousness, although his robust body powered him through ten more days of intensive, exhausting treatment. Dialysis revived his kidneys but could not save him. The damage to his brain and other organs was too extensive. On April 11, a doctor Nancy had never met before made the recommendation to remove life support. After consultation with her two adult children and with the medical team, Nancy made the hardest decision of her life and signed the papers to remove life support. Her husband of forty-six years died within minutes.

What drew me to Glenn’s story wasn’t the intricacies of burn management so much as the intricacies of error management: what happens after an error has occurred. In particular, how do patients and families get information in order to understand what happened?

The errors that took place during Glenn’s initial care could probably be explained in less than ten minutes. But it took nearly four years for his family to extract this information from the hospital. The excruciating, slogging-through-tar journey that Glenn’s family experienced is a regrettably common one. Everyone has stories about battling bureaucracies at the DMV or in government agencies but nothing quite compares to attempting to penetrate the healthcare bureaucracy in the setting of a major medical error.

It’s entirely possible that Glenn might have died even if he had been transferred to the burn unit immediately. Indeed, this is one of the most challenging aspects of evaluating a medical error—establishing causality. And it’s one of the biggest critiques of the studies that have tried to determine the number of deaths from medical error. Many patients experience errors and many of these patients die, but that is a long way from saying that the patients died because of the medical error. Errors naturally congregate around very sick patients because their medical care has exponentially more moving parts and thus more opportunity—statistically speaking—to experience errors. With complicated cases it can be impossible to tease out whether the error caused the death or whether the severe underlying illness caused the death, with the error just riding alongside.

There’s no doubt that Glenn should have been transferred to a burn center immediately. And there were other errors in Glenn’s care that came to light later. Whether these errors actually caused his death, though, is not possible to say with certainty. What is possible to say with certainty, however, is that a beloved man was ripped from his family, leaving a gaping, ragged wound that no protocol or algorithm or lawsuit could ever heal.

At the time of the accident, Glenn and Nancy’s daughter Melissa was out on the West Coast pursuing a PhD in biomedical informatics. Melissa had arrived at this field after a peripatetic student career that wound its way from cell biology to design and then eventually to biomedical informatics. She was intrigued by how one could use the principles of design to structure biomedical information in a way that’s easier for people to understand.

It turns out that having a PhD in the science of information in biomedicine doesn’t make it any easier to get information from the medical system. After Glenn’s death, Melissa was just as stunned and confused as her mother. Based on that first-day comment from the doctor at the burn center, Melissa and Nancy wanted to know why their local hospital hadn’t transferred Glenn immediately. You didn’t need a PhD (or an MD, for that matter) to look up the transfer criteria on the American Burn Society website. It took Melissa about ten seconds to find the guidelines and it all seemed rather straightforward—anyone with second-degree burns on 30% of their body should be transferred.

Melissa and Nancy weren’t necessarily interested in suing the hospital over this. They just wanted to know why Glenn’s doctors had decided not to transfer him. They both recognized that medicine is a complex field and that human beings don’t always fit the textbook. Maybe there were complicated shades of gray in Glenn’s case? Maybe someone worried about the risks of transferring an unstable patient in the middle of the night? Maybe there was a logistical reason the transfer couldn’t be accommodated? They wanted to understand what had happened and why. And they wanted to be sure that the next burn victim who arrived in the ER would get the appropriate treatment. To them, this seemed like basic information that any hospital where a tragic outcome had occurred should be willing to provide for the family. Melissa and Nancy soon learned that a 500-foot earthen dam that holds back an entire lake was a collection of mere toothpicks compared to the wall that holds back a hospital’s information when there is fear of a lawsuit.

Graduate students reside at the low end of the heap in most aspects of departmental hierarchy but nowhere more so than in real estate. Offices for graduate students were out of the question in Melissa’s department. So, too, it seemed, were cubicles. But she was able to score a desk in a hallway, surrounded by faculty offices and the daily departmental traffic.

Melissa had returned to school after her father’s funeral but it was impossible to step right back into her studies. There was still the disorienting amalgam of emotions, the surrealness of a sudden absence of someone who had always been so present. And then there were the myriad questions still hanging like daggers in the air: Why hadn’t Glenn been transferred to the burn center immediately? Did the local hospital realize its error? Was it doing anything about it?

From her studies, Melissa knew that any serious medical error should trigger an internal investigation. She wondered if the hospital considered what had happened to her father to be serious? Had they made changes to their procedures so that this wouldn’t happen to the next patient? Did they even care?

Melissa spent hours parked at her hallway desk, thinking not about her PhD work but rather about how to get answers about her father. How could her family get the information they needed in order to grapple with the enormity of losing Glenn? How could they begin to knit their lives back together without fully understanding his death?

Melissa realized that the location of her humble hallway desk was actually a resource. Not everyone who suffers in the wake of a medical error has the ironic fortune to be situated in medical school, in a department devoted to medical information, no less. Melissa sought out her professors and posed her question: what does a family do when they want to find out information from a hospital after a medical error? The professors referred her to Tom Gallagher, a religion major who segued into bioethics and became an internist at the University of Washington with an expertise in medical error. Gallagher advised Melissa to request a meeting with the hospital CEO. But he warned her that, given the pervasive fear of lawsuits, the hospital would likely be cagey in its responses.

That warning turned out to be simultaneously an understatement and prophetic. Approximately six weeks after Glenn’s death, Melissa and Nancy found themselves sitting in the office of the hospital CEO. They had invited a local pastor to the meeting, hoping that would lessen the tension. It didn’t.

For Melissa and Nancy, this meeting was about Glenn. But you wouldn’t have known that if you’d transcribed the words of the CEO. Other than an obligatory “I’m sorry for your loss,” Glenn never came up at all. The CEO didn’t even seem to acknowledge that Glenn had been a patient in his hospital. It was as though Glenn—arguably the raison d’être of this meeting—didn’t exist at all.

Nancy described to the CEO her experience of watching her husband suffer, of watching the nurses frantically trying to get Glenn transferred. The body language of the CEO may not have been deliberate, but it remains imprinted on Melissa’s memory: “He leaned back in his chair and waved his hand like he was shooing away a fly.”

The CEO informed Nancy and Melissa that the hospital was prevented—by law—from discussing the details of Glenn’s care with them. According to him, medical records and details could not be shared. Both Nancy and Melissa recalled being almost too stunned to reply. Really? The hospital couldn’t tell the family of the patient who died anything at all?

After the meeting, Nancy and Melissa mulled over this and wondered if perhaps the hospital was still in a state of confusion over the events, or maybe it was still in the middle of its own internal review. That could conceivably explain its reticence to reveal details. But they felt that their request was reasonable enough—they just wanted to understand what had happened to their husband and father. So they wrote a letter to the CEO, outlining their concerns. They inquired whether the case had been reported to the state and wanted to know what corrective measures were being taken.

The reply from the CEO reiterated that the law “specifically precludes us from disclosing information with outside parties.” Outside parties? The immediate family was considered an outside party? “Many of the issues raised in your letter,” the CEO wrote, “cannot be disclosed or discussed.”

Nancy and Melissa found this perplexing and decided to take a look at the law. The wording of the statute was dense but the gist seemed to be that internal reviews of adverse events could not be subpoenaed in a court of law. Internal reviews could be used only for disciplinary hearings by the appropriate licensing board. Presumably, this law was passed so that fear of litigation would not discourage hospitals from examining their medical errors. However, there was nothing that Nancy or Melissa could see in the law that prohibited talking with families.

It was October before Nancy secured another meeting with the CEO. This time there was a hospital lawyer present along with a member of the hospital’s board. But she got the same response—state law prevented them from releasing information. The upshot of what they said was: “If you want us to talk to you, you have to get the law changed.” Oddly enough, they even offered to assist.

Over the next few months, Nancy tried to stay in touch with the CEO, and even met with him again, but obtained almost no information. He did say that he agreed that hospitals should be able to talk to patients and families about medical errors, that it was unfortunate that the law prevented this. The one thing Nancy did learn was that the nursing staff had continued to advocate for Glenn to be transferred to the burn center over the course of his night in the ICU. At least that was something, but no other details were forthcoming. Melissa was convinced that the CEO’s offer to help write a new law was just a stalling tactic. What an ingenious way to get pestering families off your back—send them off to change the state legal code. That’ll keep ’em occupied for a few years.

But Melissa and her mother Nancy were not deterred. If changing the state law was what was required to breech the wall of silence around the hospital, so be it. Toward the end of that year, they began drafting their first bill to require hospitals to disclose serious medical errors to patients and families. They didn’t want a law that simply gave hospitals permission to talk to patients and families, they wanted hospitals to be required to disclose information about medical errors. The hospital CEO arranged a meeting with their state representative, who agreed to introduce the bill.

Meanwhile, since no further information was forthcoming from the hospital, Nancy filed formal complaints with the Kansas Board of Healing Arts (the state licensing organization) as well as the Kansas Foundation for Medical Care (a quality-improvement program authorized by Medicare).

After three months, the Kansas Foundation replied with a letter stating, “We determined that some of the care your husband received did not meet professionally recognized standards of care.” But that admission turned out to be the full extent of the information that would be shared with Melissa and Nancy. No details. No conclusions. And no action.

The Kansas Board of Healing Arts undertook an investigation. This was the most promising lead, a true medical investigation into Glenn’s medical care. Finally there would be some answers, Melissa and Nancy thought. However, they were informed that the results of the investigation would be made available only if disciplinary action was ultimately recommended. Otherwise the results would be sealed.

The investigation took a full year. Melissa and Nancy held cautious hope that this would be a detailed analysis and that they would finally learn what transpired during Glenn’s one night at the hospital. After a year of waiting, the investigation was concluded, and Nancy received the following reply: “Based upon the Disciplinary Panel’s review of the evidence in the investigation and a thorough legal analysis, public disciplinary action was not authorized.” And that was it. Case closed.

All sorts of people seemed to be able to evaluate the details of Glenn’s medical care—the doctors, the hospital administrators, the state licensing board, Medicare’s quality-improvement foundation. The only “party” not privy to Glenn’s information, it seemed, was Glenn’s family.

When Melissa was a first-year PhD student, she’d sat through the requisite lectures about medical error. She recalled that it was an uncomfortable topic. “It wasn’t something that I wanted to think about,” she said. Looking back at it later, though, it dawned on her that medical error as an educational topic was presented only from the perspective of the healthcare system—the doctors, nurses, and hospitals. Never from the patients’ perspective. All the teaching, research, and policy work about medical errors came from the side that committed the errors, not the side that experienced the errors.

In Melissa’s program—as in most others—errors were taught as problems to be solved, problems to be prevented. Important, yes, but the errors weren’t ever presented as the harm that patients and their families experienced. They weren’t presented as the death and devastation that destroyed peoples’ lives. There wasn’t a hint of the anguish that Melissa and Nancy were experiencing now.

When Melissa thinks about herself during those introductory lectures, she sees an almost laughable innocence in how her younger self could just brush away those annoying required topics. “Who would want to think about medical error? It never occurred to me that I could be on the receiving end,” she told me.

But now she and her mother were faced with a difficult decision. Kansas law states that medical malpractice lawsuits must be filed no more than two years from the date of injury. If they wanted to file a lawsuit they would have to do so before the statute of limitations ran out. They could hardly envision a less desirable project to take on in their lives. But what else could they do? It had been almost two years since Glenn died and they still had no idea what transpired on that first night in the hospital.

Filing a malpractice lawsuit requires energy and fight—things that are in notable short supply when you are grieving the death of someone you love. But there seemed to be no other way. “And we were fortunate,” Melissa said, fully aware of the irony of that word, “because we could show that there was harm done, that there was negligence on the part of the hospital, and that the negligence caused the harm.” And because the outcome was horrific enough—death—their case earned the malpractice prize of being “financially viable.” Melissa and Nancy knew that the overwhelming majority of people who’d experienced harm were not able to pursue litigation because their cases didn’t meet all the criteria.

What they did not know, however, was how traumatic and exhausting the lawsuit process would be. Once Nancy decided to proceed with a lawsuit—just before the statute of limitations expired—it was ten long months before pretrial depositions could even begin. And once the depositions started, it took another ten months to complete them, during which time Nancy and Melissa each had to testify, along with Melissa’s brother, two family friends, plus four nurses, three doctors, one physician assistant, one hospital administrator, and five expert witnesses.

“Grueling” would be an understatement. Nancy’s questioning lasted a full eight-hour day. So did Melissa’s. Some of the questions asked of them seemed pointless and repetitive. When Melissa tabulated how many pages of testimony were generated by the depositions, she noticed that her and her mother’s testimonies were more than twice as long as the doctors’ and nurses’. They equaled and even exceeded the testimonies of the expert witnesses. As a graduate student and an elementary school teacher, neither of whom participated in Glenn’s medical care or had the slightest expertise to offer, it seemed curious that the hospitals’ lawyers had such a volume of questions for them. In Melissa’s opinion it was a strategic assault, a way to wear down the family, maybe even punish them for pursuing a lawsuit, not to mention a convenient way to rack up billable hours.

It took almost two further years—on top of the two years Melissa and Nancy had already spent trying to get information—but the lawsuit was finally negotiated to an ending without having to go to court. Melissa and Nancy aren’t allowed to discuss the terms of what the parties agreed upon, but over the course of the process, they finally learned what happened to Glenn during his overnight stay at their local hospital.

They’d already known about the first error that had taken place—the failure to transfer Glenn immediately to a burn center. The second major error they learned about was the fluid management. The burn center doctor had been partly correct about Glenn not getting enough fluids, but the mismanagement turned out to be far more complicated than that. Glenn received the wrong type of fluid as well as the wrong amounts of fluid at the wrong times.

For burn victims, the recommended type of fluid is lactated Ringer’s solution, but Glenn received dextrose saline. Glenn’s blood sugar subsequently skyrocketed, and he required insulin treatment at the burn center to bring it down. The larger error in Glenn’s fluid management, though, was that the rate was not carefully titrated during that first night. Although there is a temptation to give as much fluid as possible, as fast as possible, for these severely dehydrated patients, burn protocols are very careful in the initial hours, because the vessels are at their leakiest due to the body’s seismic inflammatory reaction to the burn.

When Glenn first arrived in the ER, he was given boluses of the dextrose saline. This overly aggressive amount of IV fluid swamped his leaky vessels, inundating and damaging the surrounding tissues. One expert witness concluded that some of Glenn’s second-degree (partial-thickness) burns were converted to third-degree (full-thickness) by the excessive fluid and swelling in the tissues. (The standard formula does recommend higher rates of fluid administration in the first eight hours but does not recommend boluses of fluid.)

The burn-center doctor’s assessment that Glenn didn’t get enough fluids was ultimately correct, though, in the physiologic sense—Glenn’s blood vessels didn’t have enough fluid inside of them. So even though Glenn was receiving liters and liters of fluid, very little stayed inside his vessels, and he ultimately went into hypovolemic shock: there was not enough volume of fluid inside the vessels to reach the critical organs. (This highlights that the most important tenet of fluid management is not adherence to the standard-of-care formula—no matter how sophisticated that formula is—but careful titration of fluids to the functioning of the organs in each individual patient, especially to urine output and neurologic functioning.)

Compounding the problem, however, was that in response to this hypovolemic shock that Glenn was experiencing in the ICU, the medical team chose to administer pressors. Pressors (sometimes called vasopressors) squeeze the vessels tighter in order to jack up the blood pressure. Using these drugs make sense for some instances of low blood pressure, but if there’s not enough fluid inside the vessels, giving pressors is like gunning a car that’s out of gas.

Not only are pressors ineffective in these situations, but they are also potentially damaging. By squeezing the vessels tight, they can render it impossible for what little fluid there is to move forward. Sensitive organs such as the kidneys are often the first to go in scenarios like this, which is precisely what happened to Glenn that night. This led to another medical error.

When Glenn’s urine output began to decrease, the ER doctor responded by ordering a dose of a diuretic. A diuretic can indeed push a kidney to make more urine, but it can only do this with a functioning kidney. If the kidney is faltering because it’s lacking oxygen from decreased blood flow, you can throw on a Niagara Falls’ worth of diuretics, but little will happen. The same analogy of gunning a car without gas holds here.

There were a number of other errors in Glenn’s care that night. Glenn probably should have been intubated immediately on arrival, given the extent of his burns and the high probability of an unstable course ahead. Glenn was also given a dose of steroids. While steroids are occasionally used in treating septic shock related to an infection—though guardedly, because they are a double-edged sword—they have no role in hypovolemic shock.

For pain, Glenn was prescribed patient-controlled anesthesia—an IV setup that allows the patient to press a button to deliver pain medication when needed. This arrangement is excellent for a patient with a broken leg. But within hours of arrival to the ICU, Glenn was hardly conscious and was in no condition to be adjusting his own pain meds. While this would not be a life-threatening error, it does suggest that no one was examining the patient carefully.

Beyond the above errors in treatment, there were also errors of judgment. The nurses caring for Glenn in the ICU contacted the on-call doctor that night to try to get Glenn transferred to the burn center, but the doctor decided against the transfer and instead gave medication orders by phone. He chose not to drive the five minutes to the hospital to evaluate the patient in person. While there are certainly many medical situations that can be handled safely by phone, any patient sick enough to warrant admission to an intensive care unit is sick enough to warrant a full evaluation. Especially if there are no other physicians on site—no team of medical residents who can be the eyes and ears on the ground, no cardiology fellows, pulmonary fellows, or renal fellows to handle the complications. Thus, Glenn’s first night of ICU care was based on the initial impression of the ER doctor (who was not an emergency-medicine specialist) and then phone conversations with a doctor from home who did not personally evaluate the patient.

The litany of medical errors that unfolded during the deposition testimonies of the doctors and nurses was shocking to Nancy and Melissa. No wonder the hospital resisted revealing the details of Glenn’s care. The conclusion from the Kansas Foundation for Medical Care that “some of the care your husband received did not meet professionally recognized standards of care” was an understatement of Kansas-prairie proportions.

But the real horror for Glenn’s family was learning the details of the communications among the staff during that night. The first ER nurse had told Nancy that Glenn would likely be transferred to the burn center, but then the ER doctor said it wasn’t necessary. What Nancy and Melissa later learned was that someone in the ER had pulled out the guidelines for transfer to a burn center from the hospital’s collection of policy manuals. The house supervisor (the head nurse for the hospital that night) had photocopied the page, emphasized the transfer criteria with a highlighter pen, and then handed it to the ER doctor. The doctor still declined to transfer Glenn.

That first ER nurse didn’t stand up to the doctor, even though she disagreed with his clinical assessment. In her testimony, she stated that “she would never go against what a doctor said.”

The house supervisor, though, continued to lobby for transfer. He phoned the on-call administrator. Typically, this role is rotated among the different members of the senior leadership team of the hospital, some of whom have clinical backgrounds and some of whom come from the management world. On this night the on-call administrator happened to be the Director of Nursing. Nancy and Melissa assumed that the Director of Nursing would have backed up the house supervisor (the head nurse) in his efforts to convince the ER doctor to transfer Glenn to the burn center. Instead, she declined to call the doctor, saying that it wouldn’t do any good. (The house supervisor went to the CEO first thing Monday morning to report what had transpired.)

The overnight ICU nurse testified that she did not feel qualified to handle a patient with an illness of Glenn’s severity, and that she was essentially alone on that first night, since the on-call doctor had declined to come to the hospital. When the day-shift ICU nurse showed up the next morning, she was apparently shocked at what was going on. Her first words were something along the lines of, “Why hasn’t this patient been transferred to the burn center?” She immediately called the PA (physician assistant) covering the ICU for the day, who had Glenn intubated on the spot. The PA called Glenn’s primary care doctor, who agreed to transfer Glenn to the burn center, and the transfer took place later that morning.

Glenn died eleven days later.

“I trusted the doctors,” Nancy told me. “I trusted the hospital.” But the weeks and months of testimony were as eye-opening as they were gut-wrenching. To learn that some of the staff were fighting desperately to get Glenn the care he needed, only to be overruled by others, was simply crushing. Nancy recalled an article she’d seen in the local newspaper when the new hospital building had opened. It said one of the benefits of the new facility was that they could keep more patients there, rather than transferring them to larger hospitals.

Nancy isn’t an intrinsically conspiracy-minded person. But she couldn’t help wondering whether money played a role. Were the staff discouraged from transferring patients? Were there quiet pressures to keep patients in-house? Though maybe it wasn’t about money at all. Maybe some of the people caring for Glenn were not competent or, at the very least, were in over their heads. Alternatively, the problems could have stemmed from the hospital’s culture. Perhaps this hospital had a culture in which it was not acceptable to admit ignorance or ask for help. Maybe the hierarchies were so ingrained that there was simply no acceptable way for a decision to be questioned, even by competent and caring staff.

Melissa and Nancy both understood that Glenn’s injuries had been severe and that he might have died even if he’d been transferred to the burn center immediately. They even understood that mistakes sometimes happen, even tragic ones. What they couldn’t understand—or accept—was that they’d had to fight for nearly four years to fully learn what happened. Those years should have been theirs to dwell on their grief, their love, and the long, brambled road toward healing. Those years should have been theirs to decide how to mourn. Instead they’d had to fight.

“Not once during the whole process,” Melissa told me, “did anyone sit down with us and lay out what happened. We had to piece it together ourselves from the depositions.” Among other things, the struggle for information wrenched a hole in Melissa’s PhD program. It was just too much to balance classes with what became a second job—making phone calls, writing letters, keeping up with the depositions, and, of course, tending to the excruciating sadness in the family.

Melissa had begun reading up on medical error shortly after her father’s death. One of the cultural shifts over the past twenty years was the recognition that doctors need to openly acknowledge error and apologize directly to patients. Some states had even passed laws that offered legal protections to doctors, so that honest apologies couldn’t be used against them. To Melissa, this felt demeaning to the patients. It was as though all the concern was directed toward making things easier for doctors. They had the option of apologizing but no requirement to disclose information. Everything was from the doctor’s perspective. What about the patient and family?

Melissa and Nancy realized they were going to have to roll up their sleeves on this, even more than they were already doing for Glenn’s individual case. They had begun drafting a legislative bill in the months after Glenn’s death—based on work by Tom Gallagher and his colleagues1—and they were determined to make it law. There had to be a legal way for patients and families to obtain information from hospitals.

Advocating for their legislation was a laborious process. Melissa arranged phone calls with representatives from medical and legal associations. Nancy schlepped back and forth to Topeka to meet with state representatives and government officials, explaining the situation over and over again. Patient-advocacy groups didn’t exist in Kansas, so lawmakers had always taken their cues from medical organizations. Staking a claim from the patient perspective was an uphill battle.

State politics is always a rough-and-tumble, unforgiving setting for reasoned analysis, but Kansas was in the throes of a particularly high-voltage battle over the state budget. An unpopular governor had slashed funding for schools and public services to make up for a gaping hole in the state budget, and nearly everyone everywhere was enraged about something. It took two full years, but their bill finally secured a hearing in the Kansas House Judiciary Committee.

Three major medical organizations were also present to push a separate bill focused on protecting doctors’ apologies from being used against them. Nancy and Melissa’s bill included this protection, but it also contained a mandate to disclose serious medical errors to patients. Nancy and Melissa had hoped that they could collaborate with the medical organizations to develop a bill that addressed everyone’s concerns. When all three medical groups rose to testify against their bill, however, they realized that this was wishful thinking.

In the end, neither bill made it out of committee. “Legislators told me to keep trying,” Nancy said. “They said these things take years.” Undaunted, Nancy and Melissa drafted a second bill. This one focused solely on disclosure of medical errors to patients and families. It took another two years for their second bill to gain a hearing, this time by the Senate Judiciary Committee. But again, the medical organizations opposed it, submitting written testimonies against it. Melissa told me, “I think they were saying, ‘We have our own way of doing things. We don’t want anyone telling us what to do.’”

Neither of their bills made it to the House or Senate floor for a vote. But along their legislative journey, Nancy and Melissa found that nearly everyone they spoke with—either while lobbying or just in their everyday lives—had their own brush with medical error. Whether it concerned themselves, a relative, or a friend, there was always a medical horror story readily at hand. Medical error and patient harm seemed nearly universal.

Since the legislative front wasn’t succeeding, it was time to try something else. Nancy flew out to Seattle to visit Melissa and asked to meet Tom Gallagher. I had interviewed Gallagher for this book long before I’d come across Glenn’s story and Melissa and Nancy’s journey. So it was somewhat unexpected to have these two strands of research come together.

Tom Gallagher is an internist by training, but he has found his niche in CRPs (Communication and Resolution Programs). CRPs are intended to resolve medical error and adverse-event issues quickly and fairly, and they strive to address the needs of all parties involved—patients, families, doctors, nurses, administrators. For example, many medical professionals feel awkward talking to patients about errors, and conversely many patients don’t feel comfortable confronting their doctors. CRPs assist in the communication process and also conduct a prompt investigation into the event. Providing timely information for patients is an important goal, as is tending to emotional fallout on all sides. CRPs are committed to a constructive response, helping the institution develop a plan to prevent such errors in the future. CRPs can even help negotiate financial settlements. Done right, CRPs would avoid the foot-dragging pace (and adversarial poison) of malpractice suits and help fix the system along the way. Like the theoretical health courts, CRPs have the potential to help many more people than malpractice suits, since there is not such a steep barrier to entry.

Gallagher pointed out that CRPs aren’t about letting doctors go scot-free, a common misconception. “Doctors should be accountable,” he told me, “but they shouldn’t be responsible for problems with the system.” System failures are like traps, he said, that will sooner or later ensnare an otherwise conscientious staff member (and that person’s patient). This could be an apt description of Dr. Bawa-Garba and Jack Adcock.

Gallagher spoke about the concept of a “just culture,” where the response to an error depends on the context. If a nurse reached for an IV bag of lactated Ringer’s solution but grabbed a bag of saline by mistake, the hospital shouldn’t fire him. An accidental, unintentional error like that is part of the human condition. The appropriate response—after addressing any harm to the patient—is to fix the storage system so that it’s not possible to mix up the two types of IV bags. It would also be important to attend to the emotional response of the nurse, who might feel devastated that his split-second reach for the wrong bag might have harmed his patient.

Other errors, however, stem from at-risk behavior. For example, many doctors take shortcuts when writing notes in the EMR by doing a “cut-and-paste” from a previous note. In doing this, a doctor might miss a patient’s renal insufficiency and so neglect to appropriately lower a medication dose. The appropriate response here—after addressing the harm to the patient—would be to educate the staff as to why cut-and-paste is a bad idea: you might squeak by 99% of the time, but it puts you at risk—every time—for making an error. It’s also critical to take an honest look at a system that is so time-crunched that staff are forced to cut corners in order to keep up. A hospital would do well to proactively ask its doctors and nurses which shortcuts the system forces them to use; an avalanche of at-risk behaviors would likely come to light.

Then there are errors that result from out-and-out recklessness, such as a surgeon showing up to the OR drunk or a doctor knowingly ignoring standards of care. Even if no harm comes to the patient—as in the case of Dr. Simon Bramhall, who lasered his initials onto his patients’ livers—true negligence requires disciplinary action. A lawsuit might be part of that action. (And even though the individual is held fully responsible for this negligence, it is still worth examining the system for exacerbating causes. A culture of hierarchy and impunity, for example, might enable someone like Dr. Bramhall to consider his act as “harmless.” A high rate of burnout and substance abuse, for example, could reflect a punishing work environment or low morale. These situations are toxic for both staff and patients.)

The basis of CRPs is fairness. Patients should be treated fairly and so should medical staff. Like the Patient Compensation System in Denmark, CRPs would allow many more patients to have their cases addressed. In contrast to the Danish system (or the health courts), though, CRPs pledge to offer compensation comparable to what a patient might achieve with a court settlement. This is part of the “fairness” principle.

A hospital accountant might cast a jaundiced eye upon such fairness. If CRPs allow more patients to have their cases considered and offer settlements comparable to the court system, a hospital could be shelling out a lot more money to a lot more patients. A hospital might prefer to take the risks with good old-fashioned lawsuits, since so few patients are able to access the system, and even when they do, they usually lose. From a hard-nosed budgetary angle, CRPs might seem like a losing proposition.

Michelle Mello—the legal scholar who has written about health courts—researched this very question. She and her colleagues studied four hospitals in Boston that implemented CRPs. They calculated how much money each hospital had to pay out in liability costs over the first four years of the program and compared it to the four years before the program started. They also compared this to four similar hospitals that did not use CRPs. Their overall conclusion was that CRPs did not cost the hospitals more money, and in fact the number of lawsuits went down.2 They suspected that open and forthright discussion about adverse events with patients causes fewer of them to file claims. This makes sense given that many people—like Nancy and Melissa—file lawsuits precisely because they cannot obtain information about what happened.

The tenets of the CRPs were appealing to Nancy—particularly the focus on direct communication with patients and families—and she offered to use some of her settlement money to help fund CRP training in Kansas. Tom Gallagher was game, and five years after Glenn’s death the first CRP training session was held in the Sunflower State. It was a modest affair, with representatives from twenty local hospitals in attendance, mostly midlevel administrators. Melissa stood up first, thanked the audience for attending, and explained how the conference had come to be. Her presentation style is Midwestern straightforward, reliably unpretentious, but still she choked up when describing how her father had not been promptly transferred to a burn center and how he died eleven days later. She nevertheless soldiered on and spent thirty minutes walking the audience through her family’s journey to learn what had transpired in her father’s care.

“That’s what happened,” she said flatly, after concluding her thirty-third slide documenting phone calls, letters, inquiries, requests for information, and hours of deposition. “But here’s what should have happened,” she quickly followed up. “As soon as the local hospital learned from the burn center that the transfer should have occurred immediately, they should have reached out to my family.”

Melissa laid out an unambiguous plan of action. “They should have let us know they were aware of this and that they were going to investigate. And in a few weeks they should have gotten back to us and told us, ‘Here’s what we learned. Here’s why this happened. And here are the steps we’re taking so that this doesn’t happen again.’

“Had they done that,” Melissa continued, “it would have let us know that they realized they’d screwed up. It would have communicated that they were taking their responsibilities seriously and that they had a level of integrity. Had they done that . . .” Here Melissa paused, and the exhaustion of the years’-long journey was evident as she gestured toward her data-packed slides on the screen, “none of this would have happened.”

Nancy took the podium next. Her first slide was a portrait of Glenn. It was a school-photo type of portrait, showing a smiling, avuncular man in a brown jacket and tie. He looks like an approachable principal, the kind of school administrator whose door is always open.

In Nancy’s presentation, she reconstructed the details of Glenn’s medical care, the details that had taken years of painstaking effort to extract. She delivered her presentation in the subdued, no-nonsense voice of the fourth-grade teacher that she was. But her voice faltered when she got to the end, where the burn center doctors recommended that she discontinue life support. “That was the hardest decision of my life,” she said, her words barely audible above the emotion. “He died within five minutes.” The room hushed.

Nancy’s final slide brought back the portrait of Glenn. His presence seemed to give her courage to continue. “Using hindsight,” she said, her voice gathering strength and then blossoming into anger, “I wished I’d raised hell when that doctor put Glenn into the ICU.” Her words reverberated across the room, with exactly the forcefulness and shock you might experience upon hearing your fourth-grade teacher let loose an expletive.

She persevered through the rest of her presentation, her voice taut with determination and pain. Nancy stood next to the portrait of her beloved husband of forty-six years and concluded with a simple statement: “I now know what happened. But the one question I never got an answer to is, ‘Why?’”