How to Write a Bioethics Case Study Baby Doe
BABY DOE: HARD CASE FOR PARENTS AND COURTS
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January 8, 1984
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LAST September, the parents of Baby Jane Doe put the finishing touches on a new room designed for their first baby. They never dreamed, they said, that their newborn would be so severely ill that in all likelihood she would never come home. Nor were they prepared for the fact that their daughter, born Oct. 11 in Suffolk County, would become the subject of an unusual Federal suit by the Justice Department that may yet be decided by the United States Supreme Court.
Almost from the day she was born, the little girl's fate has been the center of a dispute involving right-to-life groups, the Vatican, the Reagan Administration and advocates for the handicapped on one side, and the parents, state courts and the State Attorney General on the other.
The legal battle has taken various turns since A. Lawrence Washburn, an avowed right-to-life lawyer, went to State Supreme Court in Suffolk shortly after the infant was born. Mr. Washburn wanted the courts to overturn the decision of the parents to oppose surgery for their daughter.
Baby Jane Doe was born with spina bifida, an opening in the spinal column; hydrocephalus, excess fluid on the brain, and microcephaly, an abnormally small brain and head, signifying a brain malfunction, her doctors testified.
With surgery to attempt to correct the spina bifida and hydrocephalus, she might be able to live until age 20, doctors say. But there is no surgery possible for the microcephaly.
At the first hearing in State Supreme Court, on Oct. 19, Dr. George Newman, a neurosurgeon at University Hospital at Stony Brook and the physician in charge of the case, testified that the infant had only ''a limited ability to experience comfort and primarily an ability to experience pain.'' ''To perform this surgery,'' he said, ''would increase the total pain that the child would experience.''
Dr. Newman testified that the surgery did not fall within ''medically accepted standards'' because of the presence of microcephaly, an uncorrectable condition that indicates the brain never properly formed.
Moreover, he said, the infant was ''not likely to ever achieve any meaningful interaction with her environment, nor ever achieve any interpersonal relationships.'' Without surgery, Baby Jane Doe might live until the age of 2, he said, and with it, possibly to 20.
Dr. Newman told a Supreme Court Justice, Melvyn Tanenbaum, that infection would haunt the child - and in her first few months of life she has suffered from pneumonia, meningitis and other serious illnesses.
In the week before Christmas, the girl's father said she had ''bounced back'' from her most recent bout with pneumonia. The only thing that keeps her on the critical list is a trace of meningitis, he said. She has gained nearly three pounds since birth and now weighs 8 pounds, 6 ounces.
Despite her birth defects, she is considered well enough now to have been moved from isolation to a bassinet in the hospitaly nursery.
''She is doing pretty well,'' her father said. ''But the day-to-day reality is not that she is coming home. That issue has never been discussed.''
Baby Jane Doe, whose name her parents will not disclose to protect their infant's privacy, was born in St. Charles Hospital in Port Jefferson. She was transferred the same day to University Hospital at Stony Brook, which has a neonatal unit capable of performing the surgery.
At University Hospital, doctors performed sophisticated tests on the infant and informed the parents of their findings. The parents - she is 23, he is 30 - consulted with family members, a number of physicians and members of the clergy before deciding against surgery. Both are Roman Catholic. They said the surgery would produce paralysis and continuous pain.
They were stunned, they said in an interview, when Justice Tanenbaum ordered the surgery. ''I couldn't talk for half a day,'' the girl's father recalled. ''I felt here was a court that was second-guessing our decision, a decision our doctors backed.''
In a ruling delivered from the bench, Justice Tanenbaum said that even with surgery the infant would be subjected to constant bladder and kidney infection, pneumonia, epilepsy. He agreed with the physicians that she would be severely retarded and would ''have an absence of personality but could experience a little emotion and would experience pain.''
He found, however, that the infant ''has an independent right to survive and that right must be protected by the state.''
The judge found the infant's life to be in ''imminent danger.''
''Where a life is in jeopardy and the parents have elected to provide no surgical care,'' he said, ''this court will order such care.''
The parents appealed, saying their child's life was not in jeopardy. The Appellate Division, Second Department, agreed with them. The child's court-appointed guardian, William E. Weber, whom Justice Tanenbaum had named as a substitute for Mr. Washburn, appealed to the Court of Appeals, the state's highest court.
It dismissed the case, chastising Mr. Washburn for initiating the suit and Justice Tanenbaum for appointing Mr. Weber as a guardian when the case did not show that Baby Jane Doe lacked proper protection.
It was Mr. Weber who pressed for a judicial authorization for surgery. The Court of Appeals held this procedure impermissible.
Weeks later, Mr. Weber went to the United States Supreme Court. Mr. Weber argued that the prognosis of mental retardation ''and other handicaps'' was the sole reason why her parents had denied the infant surgery. He asked that the New York Court of Appeals decision be overturned. The Supreme Court declined to hear the case.
The United States Supreme Court may still get to hear the case, but through another route. The Justice Department, in the first such action in a case like this, went to Federal District Court to seek the child's medical records, but lost.
In the first Federal ruling in the case, Leonard D. Wexler, a Federal District Court judge sitting in Uniondale, dismissed the case, saying that the Government conceded that its review of the infant's early medical records, which the Government had somehow obtained, showed no discrimination under the Rehabilitation Act of 1973.
In its appeal to the Federal Court of Appeals, the Government said Judge Wexler had no right to rule on discrimination, particularly since the court did not have the infant's entire medical records.
''The issue in this case is a narrow one, but its ramifications are exceedingly broad,'' the Federal court papers said.
Government lawyers said Judger Wexler had ruled that the Government's investigatory function ''can be impeded - indeed, thwarted altogether - on a preliminary finding of 'nondiscrimination' made before the administrative inquiry ever gets under way.'' pu first & LAST ADD BABY DOE
The Department of Justice did not anticipate that the case would take a turn that could affect its ability to investigate discrimination in other areas and has asked the Court of Appeals for the Second Circuit to reverse the lower court's decision.
At the hearing before the Second Circuit in December, Judge Ralph K. Winter asked a lawyer for the State Attorney General's office, which is representing the hospital, to discuss this issue. ''Suppose a hospital emergency room routinely handles handicapped people last?'' Judge Winter asked. ''What records are available in my hypothetical?''
The state lawyer, Stanley A. Camhi, replied: ''Perhaps the hospital policy or a memo. They would not need the patient's medical treatment records.''
Whatever the outcome at the appeals level, it is likely the case will get to the highest court in the nation.
This is not the first time the Reagan Administration has been involved in Baby Doe cases. But it is the first time it has gone to court to obtain an infant's medical records.
In previous cases, the Federal Department of Health and Human Services asked hospitals to turn over records voluntarily and hospitals did so, in part, some said, because they were afraid of losing Federal funds.
Government interest in Baby Doe cases began 20 months ago after President Reagan and other Federal officials learned that an infant in Bloomington, Ind., who suffered from Down's syndrome was allowed to starve after his parents refused surgery to repair the infant's defective esophagus. The Indiana Supreme Court upheld the parents' decision.
Subsequently, the Federal Government instituted regulations in 6,800 hospitals in the nation receiving Federal funds. The regulations required hospitals to place poster-size notices in prominent positions in delivery rooms, nurseries and maternity wards, reading: ''Discriminatory failure to feed or care for handicapped infants in this facility is prohibited by Federal law.''
The notices included a 24-hour toll- free hot-line number that could be called to report suspected hospital failures to feed or care for handicapped infants.
Investigations into possible discrimination could be triggered by anonymous calls that brought so- called Baby Doe squads into nurseries. Physicians were furious.
Dr. M. Harry Jennison, the executive director of the American Academy of Pediatrics, said the use of hot lines, signs and Baby Doe squads to retrieve medical records was ''terribly disruptive, particularly to the care of terribly sick infants.''
In several instances, he said, anonymous calls had mistakenly been made about infants who had been purposely not fed as part of procedures to ready them for surgery. Federal investigators took the infants' records, and surgery had to be postponed.
The American Academy of Pediatrics decided to go to court. And last April, Gerhard A. Gesell, a Federal District Court judge, struck down the nursery regulations.
The judge said the rule was adopted too hastily and failed to give the public an opportunity to comment. ''The regulation,'' he said, ''provides for an intrusive on-premises enforcement mechanism that can be triggered by a simple anonymous call.''
But Judge Gesell ruled on procedural grounds only. And the Administration is now deciding whether to make changes in the rules or not reissue them at all. The outcome of the Long Island Baby Doe case, physicians and lawyers say, will have a profound effect on the Reagan Administration's nursery policies.
Both the Baby Jane Doe case on Long Island and the hospital regulations that would permit Federal investigators to enter the nursery rest on Section 504 of the Rehabilitation Act of 1973. The section provides that no handicapped person may be discriminated against in any program or activity receiving Federal financial assistance.
The American Medical Association and the American Academy of Pediatrics maintain that the Rehabilation Act does not apply to nurseries. Government attorneys say it does.
Stephan E. Lawton, who represented the American Academy of Pediatrics in the case before Judge Gesell, said the current lawsuit could decide the scope of Section 504.
''As Courts of Appeals often do, they may feel the judiciary ought to give guidance to the executive branch on the intent of Congress,'' Mr. Lawton said. ''If they hold that 504 does not apply to nurseries, that would clearly render the regulations absolutely meaningless.''
Meanwhile, nine groups representing doctors, hospitals, the handicapped and the disabled said they supported applying the Rehabilitation Act of 1973 to the nursery.
Whether the Federal courts decide on the scope of Section 504 or not, the moral and legal questions surrounding the rights of handicapped infants and their parents have now been addressed, if not answered.
In the last two decades, ever since scientific advances in neonatal surgery made it possible to operate on severely deformed babies, hospitals have had to decide just which handicapped infants shall live and which shall die.
Usually life-and-death decisions involving newborns with severe impairments were made quietly, sometimes by parent and physician, sometimes by the physician alone. Rarely was the hospital held accountable for the decision, in part because review was not sought or made public.
Some doctors say now that mistakes were made. Many pediatricians say the decision to starve the Indiana infant because he had Down's syndrome was wrong.
Dr. Thomas Murray, a medical ethicist at the Hastings Institute in New York who is in charge of a project on Baby Doe cases, said recently that in some cases parents act for reasons other than the health of their child.
For example, parents whose religious beliefs ban blood transfusions have been taken to court by hospitals seeking to use the procedure on minors. Invariably, the hospitals win.
''What are the obligations and prerogatives of parenthood?'' Dr. Murray said. ''What is the state's duty to protect those who are in peril or to provide for their care later on, a question not always raised in the case of Infant Does?''
He proposed that the standard to apply in these cases be centered on the ''best interests of the infant.''
''And this does not mean the best interests of the parents,'' he continued.
State neglect-and-abuse laws that have been used in these cases are not really applicable, he said. Waiting for the Federal Government to intervene was ''not effective'' because too much time goes by and not all infants in need of help are identified.
He suggested that hospitals set up infant bio-ethics committees to review decisions by parents and physicians. ''Some review is necessary so that a wrongful decision is not allowed to stand.''
Dr. Jennison, the American Academy of Pediatrics director, said such bio-ethics committee were essential to ''infants in trouble.''
Dr. Alan Fleischman, director of neonatolgy at the Albert Einstein College of Medicine at the Montefiore Medical Center, said that mere ''survival is not an adequate criteria in the 1980's for the success of neonatal intervention.''
He said that of the 3.5 million babies born every year, about 250,000 will have a problem that requires intensive care.
''The cost of this care has been estimated at about $1.5 billion to $3 billion,'' he said.
Like Dr. Murray, he said there were some circumstances under which it was approprirate to consider withholding or withdrawing care from a severely ill infant.
One such situation is when the quality of life is below the ''potential for human interaction,'' Dr. Fleischman said. He said this occurred when an infant had ''no capability of human relationships or interaction.''
Right-to-life advocates and others argue that there is no way to know the actual prognosis of Baby Does. And even if there were a way to determine the quality of life for such infants, they argue, the value of life would not be diminished by disabilities.
The parents of Baby Jane Doe, who are faced with a $36,000 bill in legal fees, say their decision not to give their child a lifetime of pain is the correct one.
''Nobody can ever say that what we have done is wrong,'' the father said. ''I think we have had too many favorable court decisions.''
But Mr. Washburn disagrees.
In the latest legal twist, Mr. Washburn recently asked the Federal District Court in Albany, where his law firm is, to hear the case.
He argued that Baby Jane Doe's civil rights had been violated. He asked again that her medical records be opened. He also sought appointment of another guardian to fight for her rights.
''I'm doing the same kind of thing as the Justice Department except I'm doing it in the baby's name,'' he said. ''This is her only recourse now to get the surgery, or the appropriate medical treatment,'' Mr. Washburn said. ''We know she's a lot better, but we don't know whether she doesn't have the need for this surgery.''
How to Write a Bioethics Case Study Baby Doe
Source: https://www.nytimes.com/1984/01/08/nyregion/baby-doe-hard-case-for-parents-and-courts.html
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