Fragile Beginnings

by Adam Wolfberg, MD

  The Millers sued the hospital and its parent company, Hospital Corporation of America, claiming battery because Sidney was resuscitated without the consent of her parents, and negligence. After a one-month trial, the jury awarded the Millers $60.4 million in actual and punitive damages. But the Texas Court of Appeals overturned the verdict. In the opinion of that court, “A physician, who is confronted with emergent circumstances and provides life-sustaining treatment to a minor child, is not liable for not first obtaining consent from the parents. . . . [This is] an exception to the general rule that a physician commits a battery by providing medical treatment without consent.” The court deemed Sidney’s birth an emergent situation because her condition could not be evaluated prior to birth.

  Although the Hospital Corporation of America’s defense rested largely on compliance with the Baby Doe law, the court seemed more interested in providing physicians with legal cover when they made “emergency” decisions.

  Bioethicist George Annas’s interpretation of the Texas ruling was that “the court implies that life is always preferable to death for a newborn and thus could be interpreted in the future to support the neonatologist who always resuscitates newborns, no matter how premature or how unlikely their survival may be without severe disabilities.”5

  Whether based on Texas law or the Baby Doe rules, this dispensation to resuscitate first and ask questions later seems to be backed by essentially all legal venues. It is worth noting that these legal principles are not medical paternalism wrapped up in legalese. In the few cases where parents wanted more aggressive treatment than physicians thought was reasonable, the courts sided with the parents and affirmed the principle that life is always preferable.

  A 1994 case pitted the mother of Stephanie Keene, who became known as Baby K, against Fairfax Hospital in Virginia, where the child was born. The infant was anencephalic—a lethal syndrome in which the fetus develops without most head and brain structures. The condition was diagnosed by ultrasound during the pregnancy, but her mother insisted on full resuscitative efforts even though death was certain. The pediatricians, backed by the hospital, argued that such care would be futile and, since many resuscitation procedures are painful, inhumane because the child would certainly die. The child was intubated at birth, and moved to a nursing facility at six months of age. Even though all agreed that survival for much longer was not possible, a court of appeals ruled that the child was entitled to continued treatment if the mother requested it.6 On and off a ventilator, and without ever exhibiting any behavior that required more than her brain stem, Stephanie survived until age three and then died at the hospital where she’d been born.

  Other courts have come to the same conclusion as the appeals court in the Baby K case, even when survival isn’t just unlikely but fundamentally impossible. Shemika Burks arrived at St. Joseph’s Hospital in Milwaukee complaining of contractions about twenty-two weeks into her pregnancy. An hour later, she delivered her daughter, Comelethaa, who weighed two hundred grams (seven ounces). It is the American Academy of Pediatrics’ position that pediatricians should not resuscitate babies who weigh less than four hundred grams or are less than twenty-three weeks gestational age.7 Shemika Burks asked that the hospital staff do what they could to save Comelethaa, but the neonatologist refused and explained that even though the child had a heartbeat at delivery and moved her chest as if to breathe, she could not possibly survive, and so it would be cruel to use heroic measures. Hospital staff wrapped Comelethaa in a blanket to keep her warm, and Shemika Burks held her until she died, two and a half hours later.

  Burks sued the hospital, claiming both malpractice and that the hospital had violated state and federal laws requiring that borderline viable newborns receive everything the hospital had to offer. The Supreme Court of Wisconsin sided with the mother.

  In cases where the neonatologist attending delivery decides that the baby is too premature to survive and refuses to resuscitate the child over the objections of the parents, courts have supported the parents. Even though the children in these cases were fundamentally too immature to survive, and even though the official policy of the American Academy of Pediatrics is that these babies should not be put through the pain of a futile resuscitation, courts have determined that parents have the right to a resuscitation attempt anyway. Repeatedly, when there is a disagreement about resuscitation, courts have sided with the advocate of life, whether that person is the parent or the physician.

  Steve Ringer told me about an analogy he used to use when he counseled pregnant women who were at risk of delivering prematurely.

  If he was telling a woman who was twenty-six weeks pregnant that there was a 15 percent chance that her child would have a really bad neurologic injury, he often used the analogy of the lottery.

  “I would tell the parents, ‘If someone offered to sell you a lottery ticket for a million-dollar jackpot and they said you have an eighty-five percent chance of winning, you would buy the ticket, right?’ And of course, when I put it that way, parents would nod and smile, because who wouldn’t buy that ticket?

  “But then one day one of the residents pulled me aside and said, ‘You know, Dr. Ringer, the problem with the analogy is that when someone buys a lottery ticket and they don’t win, they go home with nothing. But with this family, if they don’t win and their baby ends up with a devastating neurologic injury, they didn’t just not win the lottery. They have to pay the million dollars and they will be paying for the rest of their lives.’

  “I stopped using that analogy,” Ringer said with a rueful smile.

  It would be easy for a neonatologist to resuscitate any baby that had even the remotest chance of survival and take the position that the courts would defend the actions, and that federal law might even demand it. And to be sure, some neonatologists—mostly those guided by personal or religious beliefs—do this. Some legal scholars believe that even though the God squad signs no longer hang, the revised Baby Doe rules and the 2002 Born-Alive act demand aggressive care for all newborns except those for whom death is certain. “Under current federal law, resuscitation is mandated,” said Craig Conway, a research professor at the University of Houston Health Law and Policy Institute.

  But dating back to the 1984 détente, the American Academy of Pediatrics’ interpretation of the law allows physicians significantly more leeway in decision making, leading to the curious situation that the field of neonatology generally functions according a “best-interests” code of ethics, one that varies from hospital to hospital and largely ignores the laws that purport to dictate how neonatologists should practice.

  Because major disagreements between parents and physicians are still extraordinarily rare, no one has an interest in disrupting a system that works. Aside from the very few cases that draw legal attention, physicians and parents make appropriate decisions that are in the best interests of the babies.

  At Providence St. Vincent Medical Center in Portland, Oregon, these decisions were inconsistent. “On one night we would be resuscitating a twenty-three-weeker, and on the next night we would be deciding with the parents not to intervene when a twenty-five-weeker was born,” recalled Joe Kaempf, a neonatologist. “It was creating a lot of stress in our unit.”

  To ensure consistency in the counseling that patients received and to develop a consensus among caregivers, Kaempf led an initiative to draw up some guidelines for resuscitating newborns who were between twenty-two and twenty-seven weeks of gestational age. The process involved a series of meetings of neonatologists, obstetricians, nurses, and administrators, who reviewed the medical literature and surveyed the doctors on staff at the hospital about their practices and their opinions. Guidelines emerged based on data from St. Vincent and from nationwide studies that reflected a consensus opinion at the hospital: for babies born before twenty-three weeks gestational age, the hospital’s policy was that resuscitation and NICU care was not an option, even if
parents requested it.8 For those born between twenty-three and twenty-six weeks, NICU care was optional, with the parents empowered to decide. For babies born at twenty-six weeks and later, NICU care became obligatory except in extraordinary circumstances.

  It was Kaempf’s strongly held belief that this hospital policy was legal—a belief shared by the hospital’s legal department. “All that [the law] says is that any birth in the United States needs to be evaluated by a physician,” Kaempf said. “It does not say you have to resuscitate.”

  Boston University bioethicist George Annas, who has written extensively on this topic, agreed with Kaempf. “The doctor is always going to have the responsibility to evaluate the kid when it’s born,” Annas said. “But evaluate does not mean resuscitate.”

  In a paper Kaempf wrote describing St. Vincent’s experience with the guidelines, parents who were interviewed reported that the guidelines were clear and useful. Perhaps not surprisingly, no parents have disagreed with the guidelines, so there has been no conflict. Fully 31 percent of parents who were counseled by Kaempf and his colleagues and whose babies were delivered between twenty-two and twenty-six weeks opted for palliative comfort care.9 Unfortunately, most hospitals don’t have such well-designed policies, and decisions are made at the last minute by whoever claims to be in charge.

  Janet, a good friend of mine, woke up one morning twenty-four weeks and one day into her second pregnancy with damp underwear. She called her obstetrician, who didn’t take her concerns seriously. But the leaking continued, and the next day she was admitted to Brigham and Women’s Hospital with ruptured membranes.

  Unlike my earlier patient, Janet and her husband, John (their names have been changed to protect their privacy), understood that preterm delivery could leave them with an injured child but were prepared to accept and love the child, injured or not. Janet lay in her hospital bed receiving the intravenous antibiotics that sometimes ward off labor and the steroid injections that would mature her baby’s lungs if it did not.

  Ringer came to consult with them and described the significant risks that accompany a birth at twenty-four weeks. After a long discussion, Janet and John told Ringer that they did not want their son resuscitated if he was born prior to twenty-five weeks. To Janet and John, an intensive resuscitation seemed to be an unnatural intervention that went against biology. If Janet’s pregnancy continued to the point where their child had a reasonable chance of a good outcome, then so be it. Before then—and they set that point at twenty-five weeks, based on counseling from Ringer—they didn’t think a resuscitation was in their child’s best interests.

  “You know,” said Ringer, “you could always wait and see how he does. We can always change direction if he is not doing well in the NICU.”

  “The problem,” John said, “is that we can make this decision now. But once my son is born, and I see him, I would never be able to tell you to stop doing everything for him.”

  Visiting Janet later that day and misunderstanding Janet’s and John’s position, the obstetrician told her that abortion at that stage was illegal in Massachusetts but that she could travel out of state if she wanted to end the pregnancy. Janet was horrified. Like Karla Miller, Janet and John were under the impression that the doctors had agreed to respect their request that their child not be resuscitated if he was born before the twenty-five-week benchmark.

  But two days later, when Janet developed a fever and went into labor, Ringer was home in bed, and the neonatologist who was on call that night told Janet and John that he wouldn’t honor the plan they’d made with Ringer. I discussed with the parents what choices they have, the neonatologist wrote in the chart, and then he described details of the resuscitation he planned.

  “We don’t really have any control here, do we?” John asked him.

  There was no answer.

  When their son was born, that doctor intubated him and whisked him off to the NICU.

  It became clear, however, that Janet’s fever was caused by an infection in her uterus that had overwhelmed her son. His lungs were seriously injured, medications were required to support his blood pressure, and an ultrasound of his head showed bilateral hemorrhages. The neonatologists told his parents he was unlikely to survive.

  At the last minute, the child was disconnected from the ventilator and a neonatologist pushed tiny rapid breaths into his lungs using a handheld rubber bladder while the team pushed the incubator and raced upstairs to Janet’s hospital room so she Janet could hold him while he died.

  “I remember,” Janet said, “that by the time they arrived and handed him to me, he was already dead.”

  It is worth noting that once the extent of Sidney Miller’s injuries was known, on more than ten separate occasions, neonatologists caring for her counseled her parents that it would be entirely reasonable to withdraw life support and allow Sidney to die. But once their daughter was born and in the NICU, Karla and Mark were attached, and each time, they insisted that everything be done to save the life of their daughter.

  Ringer made his way to Larissa’s station. As little as she was, she had begun to acquire the paraphernalia that accumulates around babies. She had a few outfits now in addition to the Polaroid photos taped to her incubator and her sisters’ drawings taped to the wall.

  With my hands extended through the portholes into the incubator, I absentmindedly held Larissa’s curled-up form. One hand encircled her bottom and her feet, keeping her knees curled up under her, the other supported the length of her back and her head. Her hair looked like it might be dark red, as Kelly’s had been when she was a child.

  Ringer must have been gazing at Larissa for some time as he stood next to me, but with my mind elsewhere, I had not noticed him come up. So as not to startle me, he moved before he spoke. “She’s doing great, don’t you think?”

  “Is she?” I asked.

  “Well, she’s off the vent.” Ringer started to list the progress Larissa had already made.

  “I know.” I smiled tightly.

  “You don’t find that reassuring. Do you?”

  “Not really.”

  Ringer tipped his head to one side, thinking. I was still holding Larissa in my hands. My eyes faced her.

  Ringer began again: “I know we are trained to practice evidence-based medicine. To seek the maximum amount of objective data—labs, imaging, examination findings—and then go to the literature.” He paused. “You’ve done a lit search?”

  “Yes.”

  “It’s not reassuring, is it?”

  “No.”

  Ringer paused again, thinking about how to get through to me.

  As physicians, we are trained to treat the parents of our patients with respect. To speak to them as equals. When the parent is a physician, it can make the conversation easier, because a language is shared. Medicine is also a bond. On the other hand, my MD was all of seven months old. There wasn’t a lot of experience resting on those letters.

  “You know, I’ve been doing this a long time,” Ringer said. “And Larissa, she just looks like a good baby.”

  He wandered off but came back a few minutes later. “I’ve asked the ethics committee to help us. I think you should meet with them. Would you and Kelly be free at three tomorrow?”

  The meeting took place in the NICU conference room. A whiteboard covered in statistics from the previous lecture to the NICU trainees about TPN for feeding premature newborns dominated one wall. Along a back table, muffins hardened next to a cold cardboard box of coffee from Au Bon Pain and some material from the Abbott pharmaceutical sales representative who had provided the food.

  Kelly and I sat together near the door. On the way in we passed Ringer, who was in a heated discussion with a gaunt gray-haired man wearing a blazer. They came into the room together and sat. A social worker wandered in, greeted everyone, and started shifting papers around in h
er thick leather-bound organizer.

  The man in the blazer, who introduced himself as an attorney and chairman of the hospital’s ethics committee, started talking to me. “Dr. Ringer tells me that your daughter Larissa is doing quite well. But that her prognosis is uncertain because of her bleed.”

  “Yes,” I said. “The literature is not reassuring.” I had a paper from the library in my hand.

  “I see.” He looked at me. “If you didn’t want to raise your child yourself, would you ever consider adoption?”

  Kelly visibly gagged and then looked at me, her face white. Holding her stomach against the pain of her cesarean incision, she got up and left to vomit.

  “Of course not,” I said angrily, and followed her.

  Chapter 7. Is Your Life Good?

  Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, is a progressive illness in which paralysis slowly sets in while cognitive function remains intact. Patients diagnosed with the disease often recall a clumsiness—increased tripping, or worsening penmanship—that went unexplained for months. Patients with ALS eventually lose the ability to walk and become wheelchair-bound. At some point, they become unable to swallow and need a tube inserted into the stomach to receive nutrition. Speaking and breathing also become impossible, as the muscles of the diaphragm and chest refuse to function. A tracheostomy—an aperture made surgically through the neck and into the trachea—connected to a ventilator is required to prolong life when this happens. Ultimately, a locked-in state occurs in which all muscular activity, even blinking, is impossible; sight, smell, hearing, and the normally functioning mind are intact, but the individual has no way to communicate with the world around him.

  The disease arrives in middle age. Patients have normal lives until that point—they have families, careers, hobbies. Unlike a child born with cerebral palsy who never learns to walk, those with ALS have the ability but lose it. Because their cognitive capacity never wanes, they can make choices for themselves. Some decide not to have the feeding tube implanted and opt to die when they can no longer eat. Most accept the feeding tube but opt not to have the tracheostomy. When the patient’s breathing fails, the level of carbon dioxide in his blood rises and he goes to sleep. A morphine infusion wards off the panic that accompanies suffocation.