Wrongful Life?

Mark and Karla Miller say a hospital is responsible for their child's severe disabilities. If the Texas Supreme Court agrees, it will change medicine as we know it.

December 2002By Comments

AS I WAVED ACROSS THE DEN at twelve-year-old Sidney Miller last August in her family’s immaculately restored stone home west of Houston, I was somberly reminded that childbearing, even in an age when we debate the ethics of human cloning, remains a perilous and highly uncertain biological process. “She can’t see you over there,” explained her father, Mark Miller, a big bear of a man who played football at the University of Texas and is now a successful stockbroker. “You have to be up about two feet in front of her for her to see you.”

Sidney, who was seated next to Mark on the couch, was dressed in blue shorts and a white blouse. Because of her cerebral palsy, her atrophied legs were pinned up toward her chest and she struggled even to sit up straight. She is severely retarded, she is nearly blind, and she cannot walk, talk, feed, or clean herself and never will. Sidney will one day be an adult but one who will require 24-hour care for the rest of her life.

Mark and his wife, Karla, don’t think things had to turn out this way. Twelve years ago, when Sidney emerged from her mother’s womb at just 23 weeks, there was nothing doctors at Houston’s Woman’s Hospital of Texas could do to prevent her premature birth. But who is responsible for her present condition is the central question forming the Millers’ lawsuit against the hospital, a case that has now reached the Texas Supreme Court. In Miller v. Columbia/HCA, the family contends that the hospital overstepped its bounds by ignoring the family’s wishes regarding the type of care Sidney received after her birth. In pitting hospital protocol against parental rights, the case has emerged as one of the most contentious Texas health care litigations since Roe v. Wade, and it has a nexus with almost every hot-button issue in modern medicine. Regardless of which way the justices rule, the Miller case will leave an indelible mark on some of the most important issues facing health care today, including abortion politics, patients’ rights, neonatology, and the influence of corporate medicine.

Still, for the Miller family, the suit is simply about the treatment of their disabled daughter. Sidney’s saga began one morning in August 1990, when Karla had to stop taking medication to diminish her premature contractions because of side effects on her heart. The Millers were told by doctors that, for the sake of Karla’s health, their first child would have to be born more than three months premature—right on the cusp of viability. (An abortion, while legal, was not something the Millers wanted.) There was a slight chance, they explained, that Sidney could survive and have a normal life with just the usual “compassionate care” protocol—hydration and warming. Sidney’s odds of survival would double, however, if she were resuscitated aggressively after birth, but that procedure would cause the infant considerable pain and virtually guarantee irreversible mental and physical impairment. The Millers decided in favor of compassionate care. “We wanted to let nature take its course,” Karla told me. “I didn’t want it on my conscience that I’d caused her pain or permanent disability.”

Karla’s doctors noted the Millers’ request on the chart, but by the afternoon, Woman’s Hospital administrators had intervened. They told Mark that since the fetus appeared to weigh more than five hundred grams, hospital policy mandated aggressive resuscitation. Mark protested that it was his and Karla’s decision. The administrators disagreed. When Sidney was born later in the evening, limp and blue, she was immediately placed on the aggressive resuscitation protocol. Two days later, the treatment caused her brain to hemorrhage, which in turn led to the cerebral palsy, retardation, and near blindness that she now suffers.

When the Millers went to court in 1992, they didn’t file a malpractice suit—”We thought the doctors just did what they were told,” said Mark—but rather a tort action alleging battery against the hospital’s management, Columbia/HCA, for proceeding with resuscitation and performing aggressive, experimental procedures on Sidney without their consent. If the hospital’s administrators so strongly disagreed with their wishes, the Millers argued, they should have gone to a district court, as is frequently done in conflicts involving the beliefs of Jehovah’s Witnesses. Columbia/HCA, the nation’s largest for-profit hospital chain, rejoined that its doctors believed that the Millers had consented, and that while parental rights apply in many cases, they don’t when a child is not terminal.

After many failed attempts at mediation or settlement, the Millers’ case finally got to a Houston courtroom in 1998. The jury took just six hours to find Columbia/HCA “grossly negligent,” and the court awarded the couple $60 million for Sidney’s past and future care. In 2000, however, the Fourteenth Court of Appeals reversed the judgment and agreed with Columbia’s lawyers that the hospital had no duty to obey the parents’ instructions. The Millers appealed to the Texas Supreme Court, which heard arguments in the case in April and could rule any day—or may have by the time you read this.

But by forcing certain difficult issues out into the open, Miller v. Columbia/HCA has already exerted considerable influence on health care—and will continue to do so—regardless of which way any court rules. To begin with, it will impact the abortion debate. It is going to be edifying to see how the solidly conservative, Republican-stacked Texas Supreme Court will negotiate the ideological pickle that Miller poses. Since Texas appellate courts seem to consider any judgment against a corporate defendant of more than $5 million to be a sign of creeping socialism, you might think it a foregone conclusion that the court will support the hospital. But if the justices sign off on this tort-reform argument, they will also be supporting Columbia’s recently introduced notion that—gulp—the Millers couldn’t make the call over their child’s treatment because at the time, Sidney was an unborn fetus without legal standing. This obvious touchstone for abortion foes has prompted pro-lifer and former presidential candidate Gary Bauer to offer an amicus brief on behalf of the Millers.

The Miller case will also have a large effect on neonatology. Over the past two decades, new gee-whiz technologies have somewhat reduced the United States’ relatively high infant mortality rate (we still rank only twenty-seventh best among industrialized nations), but they have also prompted criticism that hospitals are saving infants that have no chance of a normal life just to ring up more neonatal intensive-care unit (NICU) charges. This is a highly controversial allegation, but there’s no question that NICU treatment is expensive ($250,000 to sustain a preemie for just four months) and that it has become a significant revenue stream for hospitals. According to one study, NICU treatment is responsible for half of all income from childbirths at the average hospital, even though premature infants represent less than 10 percent of deliveries. Could there have been a financial motive for resuscitating Sidney Miller?

It’s impossible to know, but just raising the question has forced Columbia/HCA and other administrators to unwind several new rolls of red tape—review boards, manuals, and the like—to make certain that everybody is on the same page when a preemie hits the door. As a consequence, both the science and the business of neonatology, among the hottest commodities in modern health care, are in for a cooling-off period.

But in my opinion, Miller‘s biggest impact will be on the movement toward stronger patients’ rights and away from the influence of corporate medicine. Even if the Texas Supreme Court upholds the Fourteenth Court of Appeals’ opinion, it won’t unring the bell that sounded when a jury ordered a hospital to pay the parents $60 million for abridging their rights to consent to or refuse treatment for a child. Patients’ rights may have had trouble getting traction in other areas of medicine, but it has always had a firm grip in the areas of pregnancy and childbirth. Up until the early part of the twentieth century, after all, most American babies were not even born in hospitals. Even today, doctors are seen by many parents as simply facilitators in an intimate domestic event. When Columbia/HCA overruled the Millers on how their child should be treated, it was flouting a cultural tradition of parental control that the Miller case is bound to help restore.

That’s not good news for corporate medicine. When managed-care insurance and the corporatization of hospitals swept through health care a decade or so ago, it was hoped that the greater efficiencies of the business paradigm would produce both cheaper and better health care. Neither goal has been achieved; in fact, the corporate influence seems only to have subjugated the delicate, often intuitive art of medical decision making to the coarser, more impersonal discipline of business, where patients’ rights get lost in the shuffle.

Any ruling is bound to create a welcome examination of the transformation of our health care system into a machine that “produces” the most efficient, cost-effective, and liability-proof health care through a misguided reliance on precise numbers. Numbers are useful. The problem is that the knowledge based on them often conflicts with reality. A high cholesterol reading on your physical, for example, may freak out you and your doctor, but the reality is, half the people who suffer heart attacks have normal cholesterol levels. And that five-hundred-gram viability threshold imposed by the hospital in Sidney’s case may have had the backing of a lot of Big Science, but the reality, according to Mark Miller, was that Sidney was born limp and blue.

“Instead of widening the gap between mathematical knowledge and reality of a blue baby, doctors need to step into that gap and help patients through it,” said Jeffrey Bishop, a professor of medicine and a bioethicist at the University of Texas Southwestern Medical Center at Dallas who has written about the subject. “But many doctors are afraid because of potential liability risk.”

Indeed, one of the larger ironies of the Miller case is that an administrator involved in mandating the aggressive resuscitation claimed to have been sued a few years before for not ordering the same procedure for another 23-week-old preemie. This suggests that we probably do need some degree of tort reform. More important, it suggests that the real lesson of Miller is that it’s time for doctors and hospitals to stop relying on numbers and return to dealing with patients on a case-by-case basis.

If not, there will be more situations like the one facing the Millers, a family that now has its own set of numbers to ponder—$1 million in insurance and hundreds of thousands of dollars in personal funds already spent on Sidney. “We’ve just gotten started,” explained Mark. “They made all the decisions; now we have to live with the consequences. What will we do in twenty years, when we’re old and can’t feed her and pick her up anymore and maybe we can’t find insurance? Who will take care of her?”

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