Texas court to hear arguments against Baby Doe rules
Posted on 04/01/2002 2:37:22 AM PST by MeekOneGOP
Texas court to hear arguments against Baby Doe rules
04/01/2002
Charla Land embraced her 7-month-old son for the first time on the day that he died.
Zane Robert Land had spent his entire life in a hospital bed at Baylor University Medical Center in Dallas, tethered to machines that kept him alive.
MONA REEDER / DMN "In the beginning, I had the philosophy that any life is better than no life," Charla Land said. "Then the realization hits you, and you think, 'Is he ever going to have a day when he's not in pain?'" |
When Zane was born June 8, more than three months early, he weighed less than a pound and a half. By December, he had undergone more than a dozen surgeries. He was blind and had never breathed on his own. Zane needed a morphine drip every day to block his pain.
Two days before Christmas, as Zane lay in a drug-induced paralysis with an open wound from breast to belly button his insides were so swollen that surgeons couldn't close an incision his parents reached a heartbreaking decision.
"I'm sorry, little buddy, but no more," Bobby Land whispered to his son. The fight to save Zane's life was over.
The struggle for his death was just beginning.
The Lands encountered a little-known and often-misunderstood federal law that obstructed the effort to allow their son a peaceful end. Written in the early 1980s when medicine had less to offer newborns as fragile as Zane the law was meant to make sure babies received medical treatment unclouded by judgments over their quality of life. The regulations are known as the Baby Doe rules.
Legal experts often disagree about what the Baby Doe law dictates. Regardless of the official wording, it is often the mere perception of the Baby Doe rules, and confusion about their meaning, that summons them into intensive care units.
This week, lawyers will present a case before the Texas Supreme Court involving an extremely premature infant, parental wishes, and doctors acting under their idea of legal obligation. In 1990, Sidney Miller was born more than three months premature. Today, Sidney cannot walk or talk and has the cognitive skills of an infant. Her parents, Mark and Karla Miller of Houston, have sued the hospital that resuscitated Sidney against their wishes, asking the hospital to pay for her lifelong care.
1. An infant is irreversibly comatose. 2. The treatment would merely prolong dying, or not make a difference in the infant's survival. 3. The treatment would be "virtually futile" in terms of survival, and the treatment itself would be inhumane. The federal law does not leave room for judgments about the infant's quality of life to influence treatment. |
Sidney was born alive. The medical staff felt they had a legal and moral obligation to revive her, and, hospital lawyers say, believed they had the parents' permission to do so. The Millers sued and won a $60 million judgment, but it was reversed on appeal. The state Supreme Court is scheduled to hear the case Wednesday.
Health law experts are watching the Miller case, anticipating its effect on parental control in the care of premature infants. Many doctors hope that somehow, either through the Millers or other cases, laws will change.
Although no one knows how often doctors invoke the Baby Doe rules, for the Lands, the legal ambiguity meant they would agonize over their son for more than a month while lawyers conferred with lawyers about his fate.
The Baby Doe law, said Dr. Robert Fine, head of Baylor's ethics committee, "is technologically outdated, and it's morally outdated."
Nonetheless, it is the law.
Charla Land recorded almost every day of Zane's life in a small spiral notebook. It is Zane's story, told by his mother.
July 29: Recovering well from surgery. Still a little sick, but on antibiotics. Mommy misses him every second.
Just days before she began the journal, Mrs. Land seemed to be having a normal pregnancy. Married in 1998 after meeting at a credit monitoring business in Plano, the Lands had hoped for a baby for almost two years. By the end of 2000, they had all but given up. Then, in January 2001, Mrs. Land took a pregnancy test and saw two pink lines.
On June 3, 2001, she had an ultrasound to learn her baby's sex.
"It started out as the best day," she recalled. "That was probably the last super-happy day that we had."
She was carrying a boy, the doctor said. Elated, she stopped at Home Depot to gaze at the border they had chosen for the nursery.
Later, at home, she started to bleed bright red. Panicked, Mrs. Land called her doctor, who told her to rush to the closest hospital, which was in Allen. The next day, Mrs. Land was sent home with instructions to keep her feet up. She was having contractions. A few more hours passed until she went to the bathroom and felt a rubbery bulge. Her doctor immediately sent her back to the hospital, suggesting she ride lying in the bed of her husband's pickup.
The Allen hospital was not equipped to handle a baby born in the 24th week of pregnancy. The Lands were offered a terrible choice: stay in Allen or take an ambulance to Dallas. If Zane was born in the ambulance, the Lands were told, he would surely die.
They decided to risk the trip. It was 4:30 in the afternoon. As the ambulance, lights flashing, made its way south on North Central Expressway, Mr. Land followed in his truck, hazard lights on, cursing stubborn rush-hour drivers who would not yield to the ambulance. He stared at the wagon's double doors, wondering whether his son had been born.
Mrs. Land spent four days at Baylor, nauseated, with her feet in the air. "I was doing the best I could to hold him in and not move," she said.
But on June 8, Zane arrived to a roomful of doctors and nurses. Through legions of scrubs, she glimpsed her baby, tiny and crimson. "I see this little thing that looks like a thumb," she said. It was Zane's knee.
September 12: He's doing so good! ... Zane holds his passie! ... Zane should be home in about a month! Whoohoo!
The original Baby Doe was born with Down syndrome in Bloomington, Ind., in 1982. That baby had an easily fixed problem of an esophagus that kept the infant from taking food. However, the parents did nothing, and Baby Doe, with state court approval, slowly starved to death.
Furor over the case reached the Reagan White House, which, over the emphatic objections of many medical groups, directed the federal government to issue rules protecting infants with disabilities. In 1986, courts struck down the original rules. Congress, however, had passed legislation in 1984 to protect the next Baby Doe. Opinions differ about its significance.
"Some people say, really its influence is symbolic," said Dr. Jon Tyson, a neonatologist from the University of Texas-Houston Medical School who has written about the Baby Doe rules. "Then you see other people who say, 'Get real.' " The regulations "were written, I think, to be legally vague."
The legal word that often trips up health-care providers is "futile." Legally, medical treatment doesn't have to continue if it is deemed to be futile. But what does futile mean? Should a baby's odds be 50-50? Zero?
"How much of a chance do you have to have before it is hopeless?" asked Dr. Frank Clark, a neonatologist and lawyer at the University of Missouri-Columbia. Babies such as Zane Land sometimes have to wait while lawyers and doctors work out the medically legal, rather than the medically ethical, course. "The confusion caused by Baby Doe is what's leading to the paralysis of decision making."
One study, published in 1988, tried to measure the impact of Baby Doe. Researchers asked more than 1,000 neonatologists whether the law affected their practice. Sixty percent of the doctors who responded said they believed that the regulations did not take into account a baby's suffering.
"We share the concern of many neonatologists that the regulations may cause unnecessary pain to infants and their families," the authors wrote in The New England Journal of Medicine.
Researchers also asked the doctors how they would handle three hypothetical cases involving severely disabled newborns. As many as 32 percent of the doctors said that they would continue life-prolonging treatment in the scenarios described even if they did not believe it was in the best interest of the baby because the Baby Doe regulations required it.
October 29: Zane's left eye needs another (4th) surgery ... Zane will probably not be home before Thanksgiving. Mommy is feeling sad.
Zane had his first surgery within a week of birth. Still, doctors remained optimistic that he would be home by his original due date of Sept. 23.
Meanwhile, like all new parents, the Lands showed baby pictures to friends and co-workers. "He was my son, and I was so proud of him," Mrs. Land said. She couldn't understand why many people would break down and cry at the snapshots.
Zane's homecoming kept being postponed. He wasn't home by September, but maybe by Halloween. The Lands got Zane a costume. Not Halloween, but maybe Thanksgiving.
MONA REEDER / DMN Bobby and Charla Land had their son's tiny handprint tattooed over their hearts. Zane spent his entire life in a hospital bed at Baylor University Medical Center in Dallas. |
Not Thanksgiving, but maybe Christmas.
The Lands understood that their son would probably be disabled. As 2001 was ending, it became apparent to them that Mrs. Land would not be able to work she would have to spend her days caring for a disabled child. The Lands moved near Houston, where living was cheaper and they could be close to her mother, who could also help care for Zane. While Mr. Land looked for work, driving up Interstate 45 every weekend to see his son, his wife mostly stayed in Dallas with Zane.
Social workers spoke about Zane's quality of life. But the Lands desperately wanted their baby home, where they could give him unencumbered hugs without worry about dislodging a critical tube or wire. Mr. Land had been almost afraid to touch Zane, for fear of hurting him.
"In the beginning, I had the philosophy that any life is better than no life," Mrs. Land said. "Then the realization hits you, and you think, 'Is he ever going to have a day when he's not in pain?' "
Each surgery seemed to have the most dismal complication. The Lands got used to asking, "What's the worst thing that can happen" beforehand, because whatever it was, that seemed to be Zane's fate. And though he was growing, doctors had not been able to wean him from the ventilator.
Finally, on Dec. 23, the Lands decided that the most loving thing they could do for Zane was to let him go.
December 5: Zane was pretty conked out from morphine when mom and dad visited, but he managed to open his eyes once to look at us as if to say, "I'm okay." He is such a beautiful baby and his face is clear of tubes now.
Baylor's Dr. Fine met Zane on Jan. 10. The question of whether to withdraw life support had come before his committee. He talked with the Lands to gauge their motives. Did they not want to see their son suffer, or did they not want the burden of a disabled child?
"I became convinced right away they were good parents," Dr. Fine said. Everyone on the ethics committee agreed that removing Zane's life support was the right thing to do.
But later, the Baby Doe regulations nagged at Dr. Fine.
"Zane was stable on the ventilator," Dr. Fine said. "The problem was they were having no luck getting him off the ventilator."
Dr. Fine, as well as the hospital's attorneys, didn't know whether ventilator dependence qualified as the type of medical treatment deemed futile under the law. He consulted one lawyer, then another four altogether. All were worried about Baby Doe. Dr. Fine believed so strongly that Zane needed treatment stopped, he considered asking doctors to do it anyway.
"Who's gonna know?" he asked.
Lots of people, he realized, and one of them might go to the district attorney and accuse Baylor, or the Lands, of child abuse. As Zane waited, needing morphine for his pain, attorneys huddled.
Hospital attorneys called the district attorney's office. They called Child Protective Services, the agency charged with enforcing Baby Doe rules. Eventually, Zane's case ended up on someone's desk in Austin.
If the agency blocked the withdrawal of life support, Dr. Fine said, he would help the Lands find free legal help. "I told them, 'We may be in the position of telling you to sue us.' "
So the Lands waited, second-guessing the hardest decision they had ever made, mourning their son, angry at circumstance. Mr. Land was incredulous that a desk-bound functionary in Austin could determine whether his son lived or died: "How can somebody that doesn't have a clue what's going on here sit wherever they are and make this decision for our family?"
But the authorities in Austin eventually did agree that Zane's life support could be withdrawn.
On Jan. 31, Zane's family spread a blanket and some pillows on the hospital floor. A nurse turned off the ventilator. Mrs. Land was finally able to rock Zane wholly in her arms, holding her baby the way other mothers hold babies. "We were able to be parents in the best way we knew how," she said.
On his own, Zane lived 15 minutes.
At times, the Lands still feel suffocated by grief. "The black pit," Mr. Land calls it. Yet they also felt a release as Zane died, his wife said.
"He was finally out of pain. He was finally free. You could see it on his face when he went."
E-mail: lbeil@dallasnews.com
"Who's gonna know?" he asked.
Lots of people, he realized, and one of them might go to the district attorney and accuse Baylor, or the Lands, of child abuse. As Zane waited, needing morphine for his pain, attorneys huddled.
Hospital attorneys called the district attorney's office. They called Child Protective Services, the agency charged with enforcing Baby Doe rules. Eventually, Zane's case ended up on someone's desk in Austin.
If the agency blocked the withdrawal of life support, Dr. Fine said, he would help the Lands find free legal help. "I told them, 'We may be in the position of telling you to sue us.' "
So the Lands waited, second-guessing the hardest decision they had ever made, mourning their son, angry at circumstance. Mr. Land was incredulous that a desk-bound functionary in Austin could determine whether his son lived or died: "How can somebody that doesn't have a clue what's going on here sit wherever they are and make this decision for our family?"
But the authorities in Austin eventually did agree that Zane's life support could be withdrawn.
On Jan. 31, Zane's family spread a blanket and some pillows on the hospital floor. A nurse turned off the ventilator. Mrs. Land was finally able to rock Zane wholly in her arms, holding her baby the way other mothers hold babies. "We were able to be parents in the best way we knew how," she said.
On his own, Zane lived 15 minutes.
So sad, but it sounds like they made the right decision. Comments?........
Yes, they did. There's no moral obligation to take prolonged drastic measures to sustain life, especially when doing so merely prolongs suffering. They need prayers after what had to be a terrible decision.
Putting this infant through all these operations was cruel.
I don't feel sad for the parents, I feel happy for the child that it's suffering is finally over and it is now safely in the arms of Jesus.
The problem with the baby who died was obviousy very complicated, but the baby was "failure to thrive" to use an easier to understand term. Having given birth to a preemie, I know just a tiny bit about this. Some babies just refuse to thrive, not reacting positively to medical interventions that other less healthy babies heal from. After a while, it's pretty clear that those babies are suffering and will likely never get better.
My baby was born two and a half months early, and has normal intelligence, albeit with a few learning disabilities. No one who sees here would ever know of her rocky past. Which of these babies do we not "rescusitate"?
There's something intrinsically wrong with that, y'knowwhatI'msayin'...Yeah, I do!...............
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