Abstract
Kids with life-threatening illnesses need cutting-edge technology and medical expertise, but families face uneven access and paths to such care.
When their six-month-old son, Jacob, was diagnosed with Tay-Sachs—a fatal degenerative neurological disease—Todd and Savannah Marin, White, first-time parents in their early 30s, were devastated. The only option the diagnosing physician offered them was palliative hospice care. But the Marins were not willing to accept this outcome. They began scouring FDA databases for new clinical trials and contacted the founder of a Tay-Sachs research foundation. They flew Jacob across the country for assessment by national Tay-Sachs experts, and ultimately identified an experimental treatment option: an umbilical cord blood derived stem cell transplant at Kelly-Reed (a pseudonym), a top-ten ranked university research hospital. Savannah, a registered nurse, successfully lobbied her insurance company to cover the million-dollar treatment. Todd, a contractor, quit his job, and Savannah requested a medical leave of absence. They put their house up for sale, placed their belongings in storage, and moved from one coast to the other, hoping to save their son.
A physical therapist provides cognitive stimulation to Jacob Marin at 18 months.
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In Buenos Aires, Argentina, 10-year-old Ignacio Maldonado—Iggy for short—was also diagnosed with a fatal degenerative neurological disease: Metachromatic Leukodystrophy (MLD). Because international patients must pay the full amount of anticipated treatment costs at Kelly-Reed upfront, Iggy’s parents—Eva Campos, a public school principal, and Miguel Maldonado, who works in corporate sales—launched a national fundraising campaign to raise the money to cover Iggy’s bone marrow transplant at Kelly-Reed. Though bone marrow transplants are available in Argentina, local doctors had never transplanted a child with MLD. Doctors Eva contacted through a clinical trial in Italy referred her to Dr. Vogel, the head of the pediatric transplant unit at Kelly-Reed. Eva sent videos of Iggy’s symptoms to Dr. Vogel, who responded personally. When I asked Eva if the decision to travel so far for such a long and risky treatment had been difficult, she told me plainly; “No. Me hubiera ido a la luna.” To save Iggy, “I would have gone to the moon.”
The Marins and Campos-Maldonados are two of the 18 case-study families I interviewed and observed at Kelly-Reed. About half of the families were also there for stem cell transplants. Others came for enzyme replacement therapy, cancer immunotherapy, standard cancer treatments or organ transplants, and, in one case, a curative treatment for an immunodeficiency disorder available at no other hospital in the world.
Some of these families, like the Marins and the Campos-Maldonados, had an array of resources to leverage on behalf of their children to obtain the best possible medical care. Without their social networks, medical vocabularies, financial reserves, and savvy research skills, these families would likely not have obtained the specialized care and treatment they got for their critically ill children.
Janet Shim calls this bundle of knowledge and skills that can help people effectively interact with healthcare providers and navigate the healthcare system “cultural health capital.” The ability to communicate efficiently with doctors or accurately read a prescription label—much less medical journals or clinical trial protocols—can net people key health advantages.
This is especially important within the unequal landscape of healthcare. A study at the University of Alabama-Birmingham found that major teaching hospitals offered higher quality care and a survival benefit over minor teaching and non-teaching hospitals, even for elderly heart attack patients. Sociologists Karen Lutfey and Jeremy Freese found similar inequalities between two diabetes clinics. More complex—and effective—treatment regimens were prescribed by the clinic serving primarily middle-class patients, while those treated by the clinic serving primarily poor and working-class patients received less patient education, were prescribed simpler (less beneficial) regimens, and were less likely to see the same doctor from one visit to the next.
Lakira Harris plays Beyblades with her son, 8-year-old Jayden Lacoste.
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Among the families I met at Kelly-Reed, cultural health capital was often a critical factor that allowed them to strategically negotiate the stratified U.S. healthcare system to access better care. Families with less cultural health capital might eventually be referred to Kelly-Reed, but often after being shuffled around lower levels of the healthcare system.
Without their social networks, medical vocabularies, financial reserves, and savvy research skills, these families would likely not have obtained the specialized care and treatment they got for their critically ill children.
Connie and Nicholas Henderson, a poor white couple in their early 40s, brought their son to the emergency room of the rural county hospital in their hometown on multiple occasions. They were repeatedly sent home with instructions to give four-year-old Elijah high doses of over-the-counter Tylenol and Miralax for his extreme abdominal pain. The Hendersons saw two different pediatricians at their family practice clinic before one doctor suggested possible appendicitis and ordered a CT scan. The scan revealed a massive tumor on Elijah’s liver. The Hendersons were then sent to a nearby regional hospital for surgery and standard treatment involving radiation and chemotherapy, but, Nicholas reported, the initial dose of radiation “burned him up real bad.” The dose was subsequently cut in half, but had no effect on the tumor. Unlike another family I met, which had been advised by a neurosurgeon they had seen previously to take their son to a highly-regarded surgeon at a more distant hospital who specialized in their son’s particular type of pediatric brain tumor, the Hendersons simply went to the nearest equipped hospital and were treated by the doctors they were assigned. Only after it became clear a liver transplant was needed were they directed to Kelly-Reed.
Without the same skills to confidently assess treatments and providers, Nicholas still worried about the quality of his son’s care. “You’re kind of wondering,” he told me. “‘Well, did I make the right decision? Or could I have done something different?’”
Care-Captaining
Even after accessing care at Kelly-Reed, families with lots of cultural health capital remained deeply involved in the provision of their child’s medical care. They poured over detailed information on daily lab reports, negotiated with doctors, and requested treatment interventions and medication changes. Savannah Marin, for instance, lobbied doctors to decrease her son’s steroid dose to minimize his exposure to its damaging effects. Before Jacob’s treatment even began, she had requested therapies (physical therapy, occupational therapy, and even swim therapy) that “nobody at that point was recommending.” She hypothesized, “if he has a neurological disease, that’s going to affect the neural connections. Let’s make more neural connections… so then maybe he would have more places that the [metabolic] waste would have to build up… so he has even further to have to deteriorate.”
Nora Bialy, a White, middle-class mother of four in her early 40s, also requested additional medical interventions after her 16-year-old son, Benjamin, accessed elite care. When radiation for a brain tumor caused burning on the back of Ben’s esophagus (making swallowing painful), Nora asked doctors to place a gastric feeding tube to allow food to be delivered directly to her son’s stomach. She believed that this would allow Benjamin to maintain his strength and nutritional status, and reported that, once the doctors placed the tube, “he did great on it.”
Parents like the Marins and Bialys often engaged in nearly constant surveillance of their childrens’ medical care. They asked questions, made suggestions, and offered providers detailed information about their child’s responses to prior treatments beyond what might be recorded in their charts. For instance, Todd Marin told me that he had prevented a respiratory therapist from administering a breathing treatment that Jacob had responded poorly to in the past. “If I hadn’t been there,” he recalled, “it would have just been done. And then we could have had more of a negative thing.” The Marins and other very medically involved parents also caught and prevented medication errors. When mistakes were made, parents with lots of cultural health capital were able to intervene or hold providers accountable for mistakes and keep them from happening again. These small advantages could accrue to keep a sick child a bit more comfortable, a bit stronger, and a bit less likely to experience additional pain and suffering. This gave parents some sense of control over an otherwise terrifying experience.
Care-Entrusting
Families with less cultural health capital did not get as deeply involved in medical decision-making. These parents instead usually deferred to their child’s doctors, who they hoped would make the best medical decisions for their children. Mary Shaw, a White, retired, working-class custodial grandmother in her late 50s followed a series of in-state referrals to Kelly-Reed for treatment for her 7-year-old grandson’s rare genetic metabolic disorder. When I asked how she made decisions about treatments and medications, Mary told me, “I always leave it [up to them]. I say, ‘What you think [we should do] is the way I want to go.’” Pauline Donnoly, another White, retired, working-class custodial grandmother, pointed directly to her lack of knowledge about the medical system to explain why she had followed local doctors’ referrals to Kelly-Reed rather than seeking out treatment options and hospitals herself, telling me: “If I had had time to have sought out different hospitals, I still wouldn’t have known what I was looking for, or what would have been right.”
Lakira Harris, a Black, working-class, single mother of four in her early 30s, traveled hundreds of miles to bring her 8-year-old son, Jayden Lacoste, to Kelly-Reed for a stem cell transplant. But she did so not as a result of her own independent research, but because local doctors struggled to keep Jayden’s sickle-cell disease under control and eventually sent them to Kelly-Reed. This endeavor was far more logistically challenging for Lakira than for the Marins, who could rely on salary and a leave of absence, or the Campos-Maldonados, who, with a similar leave and two participating parents, could more easily care for Iggy’s older siblings back in Argentina (Eva stayed in the U.S. with Ignacio full-time, while Miguel and the other children visited regularly). Lakira, in contrast, had already had to quit her job as a security guard because of Jayden’s frequent hospitalizations, and now had to recruit relatives to care for her three younger children (separated from one another under this arrangement) whom she did not see during the seven months she and Jayden were away.
Small advantages can accrue to keep a sick child a bit more comfortable, a bit stronger, and a bit less likely to experience additional pain and suffering.
Though Lakira did not regularly intervene in decision-making about Jayden’s medical care (beyond providing consent as needed), her devotion to her son was apparent. A warm and affectionate mother, she played games with Jayden during long days in the hospital, made special trips to the cafeteria for his favorite curly fries, and wrote notes on the whiteboard in his room to keep track of the “Beads of Courage” Jayden earned for daily accomplishments like walking laps around the unit or enduring a difficult procedure. Lakira saved all the paperwork she was given about his medications and treatments, which she kept neatly organized in a plastic file tub. But she struggled to understand the medical complexities involved in his treatment protocol and, though she occasionally tried to get clarification from doctors, communication difficulties meant she sometimes found their answers unclear and remained uncertain after these interactions. When Jayden’s body began rejecting his donor cells and he was placed in the pediatric intensive care unit (PICU), Lakira found it too painful to watch him suffer. She returned to the nearby Ronald McDonald House and spent most of her time there, making short, once or twice daily visits to see her son and speak a few words of love and encouragement to him. Though her less consistent presence may have made her seem disinterested to hospital staff and other parents, she told me it was just too hard for her to “stay positive” for Jayden if she watched him sedated and suffering helplessly for long. She, too, felt helpless.
Staying “Positive”
Parent’s efforts to “stay positive” or otherwise cope with the emotional turmoil of a child’s life-threatening illness played a big role in how involved they became in directly influencing their child’s care. For parents like Lakira Harris, less cultural health capital made it nearly impossible to become deeply involved in the medical arena. Without the knowledge base and medical vocabulary that might encourage doctors to take their input seriously, their occasional attempts to intervene were not likely to succeed. But even parents with loads of cultural health capital sometimes felt emotionally compelled to pull back. Nora Bialy told me that she had decided not to look at Benjamin’s most recent MRI because “I don’t need to make myself crazy with seeing a spot that I know has something, but it’s going away. That’s just, ‘punch me.’”
Parents who could feel confident deciding when to take control of their child’s care and when to relinquish that control to medical experts had more coping strategies available to them than parents who could only “hope” that doctors were making the best possible decisions for their children. After their five-month-old son, Noah, died following complications from an unsuccessful stem cell transplant, Edward Rivera and Juliana Cruz, middle-class Puerto Rican parents in their early 30s who had actively participated in Noah’s care and negotiated with his physicians through his final days, told me their greatest comfort was that they had “tried everything that was in our hands.” That knowledge, at least, provided some solace.
Pauline told me, “If I had had time to have sought out different hospitals, I still wouldn’t have known what I was looking for, or what would have been right.”
Other parents could not feel as certain that they couldn’t or shouldn’t be doing something more. Nicholas Henderson worried that he didn’t know if Kelly-Reed was the best hospital for his son’s organ transplant. He recalled seeing commercials for St. Jude’s, and wondered aloud whether he should have taken Elijah there. But Nicholas’ knowledge about hospitals came from television rather than medical research, hospital rankings, or social network expertise. This sense of doubt and uncertainty could make an already nerve-wracking crisis in family life even more harrowing. Families who understood university and hospital rankings could verify their selection of doctors and physicians with medical experts in their own trusted social network. Those who were reading the latest medical journal articles about their child’s illness—sometimes those written by their child’s own medical team—could use these medical hierarchies and status symbols to feel good about their child’s care and hopeful about their prognosis.
The whiteboard in Jayden Lacoste’s hospital room, on which his mother has kept track of the “Beads of Courage” he earned each day.
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Those poor and working-class parents who stayed on the sidelines of their child’s medical care could appear less engaged to healthcare providers, but believed they were doing the best they could for their children by letting the medical experts lead the way and directing their own efforts toward the nurturing and loving care they could bestow. These parents often assured me it was best for them not to get medically involved because, as the mother of another teen brain-tumor patient explained while we baked cupcakes at the Ronald McDonald House, “the doctors and nurses know better than I do anyway.”
On the flip side, parents with solid working medical knowledge who intervened regularly to direct their child’s care could potentially risk intervening too much. The Marins once spent enough time getting multiple opinions about whether Jacob should be intubated and placed on ventilation (life support) that they nearly prevented doctors from providing what may have been critical treatment soon enough. Yet even though parental intervention could at times become a challenge, the physicians I interviewed on the transplant unit at Kelly-Reed told me that they preferred parents who could be their “partner” in the treatment process. One senior physician lamented that, “some parents micromanage things and negotiate medication doses to an absurd point where they don’t know what they’re doing,” but admitted that parents often suggested treatment options, caught medication errors, or identified side effects providers sometimes missed. “Sometimes the parent’s right… sometimes we’re right… sometimes nobody’s right,” she told me. In this context of uncertainty, parents tried to find ways to get the best possible care for their children while managing the often overwhelming angst they felt about the treatment process and their children’s futures.
An occupational therapist provides sensory stimulation to 2.5-year-old Jacob Marin.
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It may come as little surprise that well-to-do families accessed high quality medical care more swiftly than poor and working-class families, but the families I met in my research help us begin to see the nuts and bolts of how this happens—what people do that leads to differences in illness experiences. Getting the best possible medical care wasn’t just about insurance coverage, an ability to pay out-of-pocket, or differences between institutions in quality of care—though these issues are vital. But even after basic economic hurdles had been cleared, a tightly interwoven web of cultural health capital, differing care strategies, and efforts to meet powerful emotional needs combined to produce advantages and disadvantages during an already grueling journey for any parent or child.
Leveling the Playing Field
Many of the inequalities I found between the experiences of the families in this study can be traced not only to inequalities in healthcare provision, but to core structures of inequality that, as medical sociologist Jo Phelan and her colleagues have suggested, are “fundamental causes” of health disparities. Some people have many more resources to protect and defend their own and their families’ health than others. Inequalities in education, wealth, and social networks are particularly intractable problems that require large-scale social change.
No matter how many resources the families I came to know at Kelly-Reed had, the hoops they had to jump through to navigate the mazes of the U.S. healthcare system and the time, energy, and perseverance required to access needed care took a significant toll. Those with fewer resources to seek out clinical trials, evaluate providers, and negotiate for the best possible care might benefit from assistance in doing so. Disease-specific advocacy organizations might usefully reach out to newly diagnosed families to help them strategically seek options beyond their local hospitals and physicians and provide direct assistance in negotiating the bureaucratic hurdles of seeking new technologies farther away from home. Separating access to cutting-edge care from a family’s ability to pay and universal paid family leave to care for seriously-ill children would also go a long way toward smoothing the rocky road all of these families faced and reducing the inequities between them. Contentious as such policies may be, it’s hard to justify why they should be any more elusive than the medical miracles these families and their physicians are fighting for.