"Save My Kid"

How Families of Critically Ill Children Cope, Hope, and Negotiate an Unequal Healthcare System

Amanda M. Gengler

• Publisher: NYU Press
• Year: 2020
• ISBN:
  9781479806126
• Topic: Scienze sociali
• Subtopic: Studi sull'infanzia in sociologia

A frank analysis of the medical and emotional inequalities that pervade the healthcare process for critically ill children

Families who have a child with a life-threatening illness face a daunting road ahead of them, one that not only upends their everyday lives, but also strikes at the very heart of parenthood. In “Save My Kid,” Amanda M. Gengler traces the emotional difficulties these families navigate as they confront a fundamentally unequal healthcare system in the United States.

Gengler reveals the unrecognized, everyday inequalities tangled up in the process of seeking medical care, showing how different families manage their children’s critical illnesses. She also uncovers the role that emotional goals—deeply rooted in the culture of illness and medicine—play in medical decision-making, healthcare interactions, and the end of children’s lives.

A deeply compassionate read, “Save My Kid” is an inside look at inequality in healthcare among those with the most at stake.

Part I

Families in Crisis

1

Hope Is a Thing with Feathers

Nora Bialy stood at the counter in the middle of the large, brightly lit Ronald McDonald House kitchen washing strawberries, dunking them in melted chocolate, and placing them haphazardly on long sheets of waxed paper to cool.1 A petite, white, forty-one-year-old mother of four, with short dark hair, dressed comfortably in jeans, sneakers, and a blue floral print cardigan, Nora wanted to get her sixteen-year-old son, Benjamin, to eat as many of them as she could. “He could use the calories,” she told me. A former dietician by training, Nora had been keeping a close eye on Ben’s nutritional status for some time now.

A white sociology graduate student in my early thirties, I had been volunteering for several months at the Ronald McDonald House, a nonprofit organization that provides temporary housing to families of critically ill children. During that time, I had met and gotten to know a number of families like the Bialys and become increasingly curious about how they navigated the medical mazes involved in caring for a critically ill child. When I began conducting formal research for this project, Nora enthusiastically agreed to be my first interviewee. While she multitasked, Nora matter-of-factly recounted the sequence of events that had brought them to Kelly-Reed, a top-ranked private university research hospital hundreds of miles from their home.

When he was twelve years old, Nora explained, Benjamin started throwing up, having terrible headaches, and occasionally losing his balance. At first they thought he had a bad sinus infection, but after a few weeks of antibiotics, Nora and her husband grew increasingly concerned. Nora’s husband, William, a child psychiatrist, “knew it could be something more serious,” she told me, “so we actually pushed for [a] neurology consult, before [his providers] were really ready to give us [one].” Her husband called someone he knew and got them in to see a neurologist the very next day. When the neurologist identified pressure behind Benjamin’s optic nerve, she sent him immediately for an MRI (magnetic resonance image), which revealed a large mass at the back of his skull—suspected, and later confirmed, to be a medulloblastoma brain tumor.

As soon as the radiologist broke the news, Nora called the answering service for a neurosurgeon she had used in the past for her own spinal surgery. She got him on the phone “within like ten minutes.” Though they were not very far away from another highly ranked children’s research hospital, Nora’s neurosurgeon suggested a pediatric surgeon at a university hospital a bit farther away, because, he told Nora, “for this particular type of childhood cancer, that’s where [I] would go.” Though the radiologist who read the MRI had arranged for them to be taken to a local teaching hospital by ambulance, Nora had Benjamin transported to the hospital she now deemed “best,” and Benjamin was in surgery with the physician her neurosurgeon recommended within twenty-four hours.

Six weeks of radiation and fourteen weeks of chemotherapy following the surgery seemed to have done the trick, successfully shrinking Ben’s tumor. William and Nora went over the treatment plans, read medical journal articles, and knew that the treatment Benjamin was receiving was the latest “standard-of-care” protocol. They took comfort in the prestige of the hospital and the physicians delivering Ben’s care. “When you’re at hospitals like this one, or Kelly-Reed,” she assured me, “you’re getting cutting-edge treatment. It’s right on the tip of—it’s the best information available for that point in time.”

But a few months later, Ben’s tumor came back. “Eighty percent of the kids who get [this type of tumor] do respond 100 percent to the standard treatment,” she told me. “And there’s 20 percent that don’t. Unfortunately he [fell] into that 20 percent.” After an autologous stem-cell transplant at this same hospital also failed to stop the tumor from growing, Benjamin’s physician suggested that they enroll in an experimental immunotherapy trial at Kelly-Reed. Nora coordinated with friends and neighbors to pitch in to provide childcare and meals for her husband and their other three children while she and Ben were away. Once they arrived at Kelly-Reed, Ben was taken into surgery again to remove as much of the growing tumor as possible. This time, tissue from his tumor would be used to create an individually developed tumor cell vaccine. Once delivered, the vaccine would help teach his immune system to fight and kill the unique cells that comprised his particular tumor.

Nora hoped this would be the medical miracle they had been waiting for.

***

Connie and Nicholas Henderson had a different experience obtaining treatment for their critically ill son. A white couple in their mid-forties, the Hendersons repeatedly took four-year-old Elijah to their family physician and local rural county emergency room with severe abdominal pain, but their concerns were minimized and they were sent home. Nicholas, a high school graduate who worked as an asphalt technician when work was available, and Connie, who hadn’t finished high school and stayed home with Elijah and their ten-year-old son, Nate, were baffled by the suggestions their local physicians made, which at one point included giving Elijah four adult doses of Miralax in one day. But the Hendersons didn’t know what else to do. Connie told me despairingly:

We tried for nearly a month to get somebody to listen to us, you know? We was telling them that there was something wrong with him, [more] than just the flu and stuff, and it took us nearly a month to finally get somebody to listen to us to do some kind of test on him to find out what was causing a problem. . . . I mean, what can you do when you can’t get nobody to listen to you? We’ve made six trips in three weeks trying to get somebody to listen to us, and wouldn’t nobody do anything, until that one doctor said, “Well, I think it’s his appendix, we need to have a CT scan done,” . . . and they did a CT scan and that’s when they found the tumor on his liver. But it took that long just to get somebody to listen to us, you know?

The Hendersons felt completely helpless during this time. When I asked what the doctors at the emergency room told them when they were turned away, Nicholas explained:

They’d say, “Well, if there was too much wrong, his belly would be real tight”—which it was extended—“and he would be running a real real high fever.” But at the same time, they weren’t considering I was giving him Tylenol and Motrin around the clock [as they recalled being instructed to do]. But then when we got to [the regional hospital] one of the younger doctors had jumped on us because we was giving him Tylenol and Motrin around the clock. And I told her, I said, “We’re just doing what our doctor told us to do.” And, they said, “Well, you ain’t supposed to do that, that’s bad for the liver,” and I’m like, “Well, I’m just doing what I’m supposed to do.”

Connie interjected, “What they told us to do.” (Emphasis hers)

Clearly, the Hendersons felt exasperated by their experiences seeking help for their son. Unfortunately, their experience did not improve as Elijah’s treatment unfolded.

After the CT scan identified their son’s tumor, the Hendersons were sent to a regional teaching hospital in their area. The doctors there told them that Elijah would need chemotherapy to shrink the tumor before they could operate. Nicholas explained that at the first treatment, “They kind of OD’d him on it, because it burned him up and messed up his heart rate and everything.” They had to wait several weeks before trying again with a different chemotherapy, but that drug had no effect at all, and Nicholas worried they might use the original chemotherapy again, harming his son. The doctors told Nicholas they would use a much lower dose this time. Nicholas stumbled over the name of the drug they used, guessing it might be “Duberoxin.” Ten-year-old Nate whispered “Doxorubicin,” correcting him. The third and fourth sessions were more effective, but still didn’t shrink the tumor enough to allow for the operation. Without other options, the regional hospital then arranged for a liver transplant at Kelly-Reed. Just days after the surgery, Elijah, a pale, thin boy, with light eyes and close-cropped hair, was already back at the Ronald McDonald House, proudly showing off his scar and running around the conference room mischievously with his older brother while I interviewed his parents.

At no point along the way did the Hendersons feel confident about the quality of their son’s care. Connie believed that “if we could have gotten a doctor to listen to us in the whole month that we tried to get ’em to listen to us, they could have caught this before it got this far.” Nicholas shared this suspicion, because “they said this type of cancer, it’s fast growing. And I guess it grew that fast, within that thirty days.” Their exasperation was only deepened by the fact that the oncologist at the regional hospital told them a simple blood test could have identified the problem much sooner.

Unlike their previous experiences with the medical system, the Hendersons felt positive about their treatment at Kelly-Reed. Still, Nicholas worried about whether he had gotten the best possible care for his son. His anguish was plain as he voiced his uncertainty:

Before he had his transplant, I guess, like any other parent, you’re kind of wondering, “Well, did I make the right decision? Or could I have done something different?” And before he was diagnosed with cancer, I used to see St. Jude’s on TV all the time. And I’d sit and watch it, and it’d bring tears to my eyes. And I’d thank God that wasn’t my kid. And then, when it was [my kid], that kind of tore me up [Nicholas became choked up]. But I thought about that. Am I making the right decision? Do I take him there [to St. Jude’s], or where do I take him? And the doctor back at [the regional hospital] says, “Well, we’re contacting everybody,” and they said, “Well, Kelly-Reed was the first one to respond.” We never really second-guessed the doctors. We’re just sort of, kind of, wondering if it was the right decision.

When I asked Nicholas if they tried to learn about the doctors or the hospital, before they arrived, he said, “No, I just sorta, kinda put my faith and trust in God and hoped that He would kinda help guide things the right way, and make everything turn out alright.” But it was clear that for the Hendersons, abstract faith didn’t offer the same level of confidence and reassurance that the Bialys’ medical research, knowledge of institutional prestige hierarchies, and trusted referrals provided them. Nora Bialy felt relatively secure in her hope for her son that night in the kitchen. But Nicholas Henderson was haunted by doubts, even though—paradoxically—his son was doing much better than Nora’s was.

Captaining or Entrusting Care

A child’s critical illness is, for children and parents alike, what medical sociologist Michael Bury calls a “biographical disruption” that requires parents, close family members, and older children to entirely reconsider how they imagined their lives would unfold.2 Both the Bialys and the Hendersons wanted to do everything they could to save their children from life-threatening illnesses. But they had very different resources available to them and took a different approach to managing their child’s illness as a result. The Bialys regularly adopted an illness management strategy I call care-captaining. If we think of navigating a child’s life-threatening illness as akin to steering a ship through stormy waters, then care-captaining involves metaphorically taking the helm of the ship and working hard to influence the course the child’s treatment will follow.

The Hendersons generally adopted a different approach, which I call care-entrusting. This strategy involves turning the helm of the ship over to “the experts”—a child’s healthcare providers—whom care-entrusting parents often view as better equipped to steer the most effective course of treatment. Both approaches have pros and cons, and as we will see in the chapters ahead, they are not mutually exclusive. Most parents care-captained and care-entrusted at some point in the illness process, but were often driven toward one strategy or another depending on which approach allowed them to create and maintain as much hope as possible for their child’s recovery. Maintaining hope helped families proactively manage the upsetting emotions triggered by a significant threat to their children’s lives. How effective parents could be at care-captaining, however, and obtaining the kind of medical advantages it could net them, depended a lot on the resources they could mobilize to support their efforts.

In this book, I examine how families like the Bialys and the Hendersons access highly specialized medical care for children’s life-threatening illnesses and how they negotiate their children’s care throughout the course of treatment. I asked what families did when their child first became ill or was diagnosed with a life-threatening condition, and what they continued to do as the illness and treatment plan progressed. I asked, and sometimes observed, how they juggled conflicting opinions and made difficult decisions. Ultimately, I came to understand that the intense emotions provoked by a child’s critical illness—like the fear, uncertainty, and physical and emotional distress voiced by Jamilla Finley in the prologue to this book—played a potent role in shaping families’ choices to care-captain or care-entrust. Access to needed resources of all kinds were crucial, of course, but families’ efforts to minimize emotional upset as much as humanly possible also profoundly influenced their decisions, social interactions, and illness management strategies throughout their child’s illness.

By analyzing their experiences, I hope to make better sociological sense of the intricate interactional dynamics that can exacerbate inequalities among those negotiating the healthcare system. Teasing out the often-overlooked role that emotional goals play in this process reveals their centrality to the reproduction of inequalities in healthcare broadly. Given this complex interrelationship, reducing inequalities in healthcare would require more than a reallocation of resources designed to help all families obtain greater access to the kind of care available at institutions such as Kelly-Reed. It would require a substantial reallocation of resources and a sea change in the emotional cultures surrounding sickness and caregiving in the United States today. Given the degree of inequality in contemporary US healthcare, the need for such change is pressing.

Healthcare Inequality and Cultural Health Capital

The landscape of healthcare in the United States is a steeply hierarchical one. Those with more resources are able to access substantially better care than those with less. This is true even for those seeking help for the most common health problems. Medical researchers at the University of Alabama, for instance, identified outcome disparities for heart attack patients who received care at different types of hospital facilities.3 Patients treated at major teaching hospitals (such as Kelly-Reed) had improved survival rates in comparison to those treated at minor teaching hospitals (such as the regional hospital that first treated Elijah Henderson). Those treated at nonteaching hospitals had the lowest survival rates.

The quality of care provided for routine chronic conditions varies dramatically as well. Sociologists Karen Lutfey and Jeremy Freese identified significant inequalities between two diabetes clinics, one serving primarily middle-class patients and one serving primarily poor and working-class patients.4 The first clinic offered greater continuity of care (in which the patient sees the same provider from one visit to the next), more patient education, and tended to prescribe more complex—and more effective—treatment regimens. The clinic serving primarily poor and working-class patients offered little in the way of patient education (even though these patients stood to benefit more from it, as they brought less medical knowledge to the table), kept patients waiting for extended periods of time, and tended to prescribe simpler regimens that were easier to manage, but less effective. The problem was not simply bias on the part of providers, but the resources available to them and their patients. For patients who struggled to hold down multiple jobs, lacked reliable transportation, and juggled ad-hoc childcare arrangements, intricate treatment regimens may indeed have been impractical and without perfect implementation might in fact have harmed their health further. Through these and other avenues, Lutfey and Freese argue, social inequalities breed health disparities between groups.5 Access to experimental or “cutting-edge” treatments and medications is often even more unequally distributed.6

Social scientists and public health scholars have conducted countless studies documenting inequalities like these throughout the US healthcare system. Much of this literature has focused on difference across patient characteristics (such as race, class, gender, and sexual orientation) and physician bias, with less emphasis on what patients and physicians actually do together during the help-seeking and treatment process.7 This is important because patients and families are increasingly expected to possess “lay expertise” and be active consumers of their healthcare.8 As a result, researchers have recently begun paying greater attention, along the lines of Lutfey and Freese’s work, to how the structural features of the healthcare system combine with the actions of patients and providers to produce health disparities.9

In order to bring interactional dynamics...