A Child's Life
Volume 25 Number 2
Richard B. Miller
Photo © Tyagan Miller
What It Means to Care
Billy was back in the hospital. He was there for his second bone marrow transplant to treat a metabolic disorder called Hurler syndrome. He'd been hospitalized many times before with ailments brought on by his illness, including hydrocephalus (excess spinal fluid in the skull), developmental delays, pneumonia, a weakened heart, and renal failure.
He was 4.
"Billy is a fighter," his mother often said.
No, Billy's a hostage, Richard Miller would think.
"When I first saw Billy, he was huge. His kidneys weren't functioning properly, and he was so overloaded with fluids that he looked like the Pillsbury doughboy," recalls Miller, a professor of ethics and chair of the Department of Religious Studies at Indiana University Bloomington.
Steroids had turned Billy bright pink. Multisystem organ failure required that his body be mechanically sustained. "Basically," Miller says, "nothing was working."
Billy stayed that way for two months, kept alive by aggressive medical care to see if his transplanted bone marrow would produce the healthy blood cells and enzymes he needed to survive.
A research epiphany
To his parents, Billy was "feisty," invested with the power of God's will. "He's unpredictable," Billy's mother told Miller. "God lets him win battles. Billy is a fighter."
The language has a familiar ring. Seriously ill patients are often called fighters, described as independent souls making their own choices about what will, or will not, be done.
But in pediatric cases, Miller says, that description doesn't apply.
Miller met Billy and his family in a Boston children's hospital. He spent a year at the hospital, serving on the institution's ethics committee. He also spent six grueling months on medical rounds in the pediatric intensive care unit, doing ethnography along the way. Ethnography§research conducted in the "real world" such as the hospital's pediatric unit§is not an ethicist's standard practice, but by getting up close, Miller hoped to get a keener, more intimate sense of the culture of pediatric care and the moral and professional challenges care providers face. He was motivated by professional and personal reasons combined.
As co-directors of a project funded by the Lilly Endowment, Miller and IUB Professor of Religious Studies David Smith convened a three-year national seminar on ethical issues in professions. Medicine was one of the professions studied, and Miller got interested. At age 9, Miller himself had been hospitalized with a diagnosis of a possible heart tumor. Years later, as a father, he found himself back in a pediatric wing with his infant son.
Miller and son are fine now, but those hospital events were eye-openers, pointing him toward the world of pediatric medicine where he experienced an "epiphany," he says, about the moral nature of parental authority, physicians' prerogatives, and children's fundamental rights.
Ethics fit for kids
Over the last 30 years, Miller explains, ethical questions about medical treatment have centered on cases involving adults. Arguments defending the right of the patient to choose or refuse treatment have assumed the patient in question was mature, capable of making reasoned decisions. Walking the hospital wards, Miller realized that in the world of children and young adolescents, the dominant medical ethics model was simply wrong.
"In the pediatric world, the adult paradigm really distorts what's going on for several reasons," he says.
First, most children lack the tools to make adult decisions. They're simply too young to fully comprehend their diagnosis and prognosis, or to make informed choices about their care.
Second, they're not independent, freestanding agents. As children, they are still members of a social unit, the family, that "has its own authority, values, and inherited traditions," Miller says.
Third, sick children mature, gradually developing the autonomy to choose over time.
Miller sums up the distinction between adult and pediatric medical ethics this way: "In medical ethics, we ask, ćWhose life is it anyway?' In the adult world, the answer is, ćTheirs.' Adult patients are responsible for themselves, and modern bioethics esteems that individual's right to autonomy.
"In the pediatric world, the answer is, ćOurs.' So the question is, who is the we?"
From war to wards
At a minimum, the "we" is the physicians, the family, and the child, which complicates a pediatric care provider's job immensely, says Miller. "Within the pediatric context, the responsibilities of care providers are very different. They have to clarify what it means to care in light of the child's needs and the family's heritage. They have to move between the two, and that's a very complicated, very difficult thing to do."
Miller sorts out the "terms and conditions" of children's care in his new book Children, Ethics, and Modern Medicine (Indiana University Press, 2003).
But why the need to sort things out§doesn't a sick child's family have final say?
Responsibility for a child's medical care does fall first to the family but, Miller argues, that authority is not absolute. He draws on his expertise in political philosophy (Miller is author of two books on ethics and war) to explain.
In political theory, one of the central questions is whether a state has a right or duty to intervene in another state where part of the population is suffering. Generally, the moral response is that states should be left alone to solve their own problems internally. A state's "right to revolution is considered a stronger right than the right of outside states to intervene," Miller says.
Intervention in the pediatric world is analogous. Think of the family as a state, says Miller. Following the reasoning of political theory, a family's right to privacy and to regulate its own affairs is strong. But the moral barrier to intervention can be breached, Miller says, to protect the basic rights of the child.
Children have certain inherent rights based on fundamental human needs, says Miller.
When it comes to very ill children, "we're talking about children who are vulnerable, who are powerless, who are at risk. And in need of care," Miller says. "These children have a right to develop physically, psychologically, and intellectually; they have a right not to be used in ways that are detrimental to their welfare. If parents can't protect these rights, then there are other authorities that we rightfully ought to commission to protect the child from violations."
While Billy lay in the hospital kept alive by machines, his mother told Miller everyone was "waiting for Billy to tell them what to do." In other words, says Miller, as Billy's parents struggled against the unbearable choice of letting their son go, they left the choice to Billy, assigning their son precisely the autonomy that doesn't apply in children's cases.
Miller's hospital experience gave him enormous sympathy for such families, who faced the daily anguish of dealing with a gravely ill child. But in Miller's view, Billy's parents were simply asking too much of the 4-year-old. In the drive to keep him alive in his last round of aggressive medical treatments, the parents abdicated their responsibility to protect Billy's physical welfare. Billy was exploited and had the right to make a claim against the authority of his parents.
"It's an example of a child's basic interests being held hostage," says Miller. "What were they hoping for? Billy had given it all he had."
A different definition of care
In an ideal world, the interests of family, physician, and child agree, but in his fieldwork, Miller saw many cases, like Billy's, where they did not. When family wishes conflict with the interests of a sick child's basic well-being, pediatric care providers have a moral responsibility to do more than respect family privacy and parental autonomy, says Miller. They must advocate for the child, even if that means advising the family to cease aggressive medical treatment.
"It's a different definition of care," Miller acknowledges, one that he says he saw too little of in the pediatric settings where he worked. Miller observes that hospital personnel rarely take the route of open communication, offering families their unvarnished views of what ought to be done§they are hindered by extreme time pressure and by a Western medical view that valorizes the technical and mechanical over the personal. And for parents and guardians, the notion that care may mean less than "doing everything" assaults their very identity and purpose, to keep their child alive. But according to Miller, in pediatric cases such as Billy's, honoring and preserving the child's welfare interests is the right moral choice, even if it is shot through with sorrow.
When Billy diedhis internal organs finally giving outMiller grieved deeply with Billy's mother, who had become a friend. For the sake of other ill children, he hopes hospital ethics committees, physicians, and parents alike may begin to focus on children's rights, balancing the duty to care with a commitment to justice.
Lauren J. Bryant is editor of Research & Creative Activity magazine.