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Addicted Mother, Premature Aborted Baby?
Preemies: Baby Doe law creates miracles — at a cost
The Sociology and Ethics of Neonatology
Summary: The premature birth of a child under normal
circumstances requires highly skilled nursing and medical
care if the child is to survive. The birth of a premature child
to a known Cocaine addicted mother greatly increased the risks
of mortality. In this case, a child intended to be aborted is born alive.
When the physician orders that the child be to left to die,
it miraculously survives on its own. Were the nurses liable for
"following orders?"
The pregnant woman had an active history of Cocaine and
Marijuana substance abuse during her pregnancy. Her
admission to the hospital was for the specific purpose of an
abortion. Her addiction would make her a high risk obstetrics
patient.
"Abuse of alcohol and other drugs is associated with low birth
weight and preterm birth, but relatively few pregnant women
engage in drug abuse. The recent "epidemic" of cocaine use in
the United States did not have a large effect on overall rates of
low birth weight or preterm birth and may have been confined
to local areas.16 However, some individual mothers and infants
do suffer from the effects of drug abuse. Many women who
desire to enter drug treatment programs are turned away because
programs for drug-abusing pregnant women are generally
unavailable.17"2
The mother's labor would progress and in the absence of the
physician, the fetus was delivered by the nurses.
"Premature Birth and Low Birth Weight Infants
Low birth weight (LBW - under 2500 grams) occurs in seven
percent of births in the United States, and is associated with over
half of infant deaths. Risk factors for low birth weight include
late entry into prenatal care, low socioeconomic status, poor
reproductive history, poor weight gain, smoking, and substance
abuse.
Very low birth weight (VLBW) and extreme prematurity (weight
under 1500 grams) occurs in fewer than one percent of pregnancies
but consumes enormous financial and human resources."3
In the State of Tennessee, a child inadvertently born during an
abortion is afforded special protections. A child born in this
manner is entitled to treatment as if it were a typical premature
child. A child acknowledged to have born under these conditions would
have received supportive measures as required by law.
The premature following delivery would intubate the child and begin
life supportive measures to keep the child alive.
The physician would soon arrive. He noted that the child weighed
less than 1.5 lbs at birth and commented that the chances of
survival were poor. On discovering the child had been delivered,
he would order extubation after a brief examination.
In essence, he ordered cessation of all life supportive measures to
the premature infant. The physician's orders were to leave the
child to die.
"Which premature infants are so malformed, sick, or immature that
newborn intensive care (neonatal intensive care) should not be
administered? The potential benefits of intensive care--expressed
in terms of total years of life or total disability-free years that may
be gained from use of intensive care--are greater for these infants
than for older children or adults. However, the costs--both human
and material--are also greater, particularly for infants
(and their families) who survive with severe lifelong handicaps.
Decisions about whether to provide neonatal intensive care to
marginally viable newborns are particularly difficult, in part
because the infants are unable to speak for themselves."4
The premature followed the orders of the physician. They extubated
the child and prepared for the death pronouncement. The child
would continue to breath on its own after extubation for over an
hour.
At that point, the child would be transferred to another facility.
A Neonatologist would attend to the child who would be left with mild
hearing and speech impairments. These were presumably a direct
result of oxygen deprivation to the brain. During the time period
following extubation and until the transfer/admission the child had
been breathing on its own.
A lawsuit would be filed on behalf of the child against the
Delivering physician, the hospital and the attending nurses.
Claims included negligence, medical malpractice, battery, and
outrageous conduct. It alleged that the providers were in violation
of the Tennessee statute outlining the right to medical
treatment of an infant prematurely born during an abortion.
There was controversy over which protections the child was
entitled to. Although it was clearly born premature and without the
presence of a physician, it had been admitted for the purpose of
abortion.
The initial court noted that in this circumstance the child had not
been expected to live following delivery. It found that the nursing
actions under the direction of the physician were consistent with
their interpretation of the law.
In a voluntary action, the premature were removed from the action by
the plaintiff. The court then called for a directed verdict in favor of
the defendant physician.
The plaintiff appealed:
Questions to be answered:
1. Could the premature be held liable for negligence because they
followed the physician's orders to extubate the child.
2. Was the child protected under the legislation governing children
born during abortion attempts.
The appeals court in reviewing the proceedings noted the
following:
In the initial trial, the court clearly agreed that because the child
was born prematurely. There was no question that regular
protections afforded preemies were appropriate. The confusion
was over protections to fetuses delivered during the "act" of an
abortion.
It agreed that because the pregnant mother had been admitted for
an abortion, the physician and premature acted appropriately in
withholding life support. It did not however, agree that the child
was entitled to the special protections afforded to preemies born in
attempted abortions. This is mostly likely due to the fact that the
physician was not present during the delivery or actively
performing an abortion at the time.
The plaintiff's attorneys had argued that care was negligently
withheld. The appeals court noted that it did not however, produce
expert testimony to support that argument. No relevant caselaw
was presented to support the plaintiff's position.
In light of the lack of testimony by the plaintiff, the appeals court
affirmed the judgment of the lower court.
Could the case have gone differently if expert testimony and
previous precedents had been presented? Yes! Definite harm most
may have come to the child due to the lack of supportive measures.
It was fortunate for the premature that the court ruled against
negligence.
premature clearly have a duty to the patient when there is a question
of whether or not it is appropriate to carry out a physician's orders.
When faced with this situation, it is best to consult with another
nurse or a nursing supervisor before proceeding.
If there is still a question and if time allows, the chain of command
established by a facility must be followed. The benefit of this to
the nurse, is that a second opinion and so on is obtained. If the
orders turn out not to be appropriate, it is then not simply a nurse's
judgment or word against that of the physician.
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Professional CornerPreemies: Baby Doe law creates miracles — at a costPart one in a seriesYour baby is born four months premature, weighs one pound and is deaf, blind and missing half its brain — a human thing that previously would have been allowed to die. But now a little known law insists your doctor keep the baby alive. Miraculously, over the next six months, it survives operation after operation, all without painkillers. You love the child. It is yours. The government that willed it alive says its crushing costs are yours as well: hospitalization, day care, special education. Now multiply your little miracle by the quarter of a million critically disabled children brought to life since the law was passed. The tittle miracle is yours. The shame is ours. By Mark Hunter The American
There were times when Carol Castellano wondered if her daughter would have been better off dead. A "super-preemie" born in 1984 after only 23 weeks in the womb, Serena is one of more than a quarter of a million disabled children who owe their lives to ink: The Baby Doe legislation of 1982-84, which made it a crime for doctors to do less than the maximum to keep even the least tenable infants alive, many condemned to years of pain and misery. But these quarter-million children who would have been left to die before Ronald Reagan signed them alive. All would become a burden on their families, a burden made all the more onerous by the lack of government support. The same government that willed them alive, willed them crippled and would heartlessly abandon them and their families. Like so many others in this unnoticed, unreported population, Serena would not have survived the delivery room only years earlier. Like so many others, Serena survived to suffer. Born blind, brain damage prevented her from speaking or chewing, and pulmonary and abdominal abnormalities required six operations in her first eight months — not one with anesthesia. "If I'd had some way of knowing what (extremely premature) babies endure, I wouldn't have wanted my baby to go through that," says Carol Castellano, president and cofounder of New Jersey Parents of Blind Children. "I adore my daughter. Fd never wish her away But if I were in premature labor, I wouldn't go to a hospital. I'd stay home and let nature take its course." Mother and daughter were among the first to be caught in a wave of radical change driven by dramatic advances in medical technology, and by fierce competition for prestige and profits within the burgeoning field of neonatology — the medical specialty devoted to the tiniest babies. Swept up in this wave are doctors ambitious to save children's precarious lives, parents who question the wisdom of these efforts, and the children who are lifelong victims. The impetus for these changes was a little-understood but far-reaching federal mandate — the Baby Doe regulations of 1982-84. They began with a national scandal that erupted in Bloomington, Ind., when the parents of an infant born with Down syndrome and an operable but life-threatening condition elected to withhold surgery As a local prosecutor and right-to-life groups petitioned the courts to force treatment and lost, President Reagan directed the Department of Health and Human Services to create rules to ensure no infant ever again would be denied care. By 1984, the Child Abuse Prevention and Treatment Act had ordained that aggressive treatment of premature infants must be given, regardless of the prospects of future disability or the wishes of parents. The only exceptions: unless the provision of such treatment would be virtually futile in terms of the survival of the infant, (and) inhumane." To ensure that doctors erred on the side of life, posters went up in hospitals, offering a hotiine number to anyone who believed that a baby who might survive was being denied treatment. At best, these laws have spawned half a miracle. Largely due to the resultant advances in neonatology, U.S. infant mortality — the percentage of babies who die in their first year reached an all-time low in 1995 (the last year for which data are available) of 7.9 per thousand. Even more striking is the increase in the number of survivors of premature birth. According to the National Center for Health Statistics, in 1980 —before Baby Doe took effect — about 36,000 live births involved infants born at a "very low birthweight" — under 3 Ibs., 3 oz. (Five lbs„ 8 oz. is considered minimum normal birth-weight.) In 1995, there were over 52,000 such births — a 44 percent increase, while the overall number of births rose only 24 percent. And nearly half of those babies were in the "extremely low birth weight" to an oxygen tube shortly after the cost of Natalie's birth to ind other disabilities, category, under 2 lbs., 2 oz. According to Dr. William A. Silverman, one of neonatology's founders, few of these miracle babies of the popular press — super-preemies — would have survived only two decades ago. Yet the number of disabled survivors has also reached a record level — as one study describes it, an "unavoidable side effect of the increasing success of neonatal intensive care." Of the 25,000 tiniest babies, between one-sixth and one-third will be severely disabled as a consequence of failure of their immature lungs, liver or other organs. Another one-fifth to one-third will suffer what is termed "mild" or "moderate" disability, anything from mental retardation and partial blindness to behavioral or psychological disorders. These statistics do not even suggest the true scope of the problem, says Dr. Lucille Perrotta, a New York neonatologist. "It's probably closer to 100 percent," she asserts. "They all need services when they go home. A lot of pediatricians don't want to take care of these babies. They're difficult, time-consuming. They get sick a lot". The toll is heaviest among the most remarkable survivors, those born after only 22 or 23 weeks in the womb at weights of a pound or less, now routinely "saved" in neonatal intensive care units. Dr. Ronald Hoekstra of Children's Healthcare in Minneapolis notes that of the 50 percent of his hospital's 23-weekers who survive, a full 29 percent are severely disabled. Hoekstra is proud that he has saved seven 22-weekers born at his hospital since 1991, a survival rate that is actually among the best in the country. However, among those seven babies, the toll is startling: "One is normal, one is mildly disabled, three are severely disabled, and two are open to question," he said. Since aggressive neonatal care was nationally mandated in 1982 44, between 240,000 and 430,000 disabled babies have been brought into the world, according to Dr. Patricia Shiono, director of research in epidemiology at the Center for the Future of Children In Los Gatos, Calif. Definitive statistics are unavailable because many hospitals do not follow up on survivors of neonatal intensive care. This much is certain, says Jonathan Muraskas, assistant director of neonatology at Chicago Loyola University Medical Center: "We're creating a new population." And this population is growing. Dr. Michael West is a researcher in special education and rehabilitation at Virginia Commonwealth University in Richmond, and a consultant to school systems. "I'm seeing more kids with more health problems — liver diseases, lung, heart disease," he says. There are more children born with health impairments — mental retardation and physical disabilities. Before, a lot of these kids were allowed to die naturally. "I do struggle with this, and I don't have the answer," says Dr. Marilee C. Alien, a neonatologist at Johns Hopkins University School of Medicine in Baltimore. I think what I'm supposed to say is, "Of course we should do whatever we can to help the baby survive. In practice, that's what I do. But I despair when I see parents so overwhelmed by the business of living with a disabled child." Is half a miracle better than none? Fifteen years and a quarter-million disabled children after the federal government mandated aggressive treatment for the most pre-maturely born infants, the answer remains uncertain. Outside of the medical community and families whose lives have been irrevocably altered, Baby Doe has become a national non-issue, all but hidden from public view. Two schools of compassionate thought are In conflict here. Focused on the infant's right to life, one side believes that where there is the slightest hope that a baby will beat the odds and live, that chance must be taken. The other side holds that only those who must live with the burden of a disabled child — a burden that can weaken or destroy families — should have the right to demand the maximum aggressive care to ensure the child's survival. This stance takes the family's and the infant's future quality of life into account. Only a minority of physicians subscribes to the latter view — and not only because under current law anything less than the most aggressive treatment can provoke prosecution for child abuse or manslaughter. Trained to defeat death, doctors find it profoundly repugnant to withhold treatment. Some believe that for the sake of scientific knowledge the aggressive treatment of the tiniest babies must continue for the sake of scientific knowledge. Others support routine aggressive treatment for less altruistic reasons. Diane Maroney of Parker, Colo. is a former neonatal nurse whose four- year-old daughter, MacKenzie born at 25 weeks, remains stricken with life- threatening chronic lung disease. Maroney will never forget the bed-side words of her daughter's neonatologist as he explained why he'd overruled their tearful decision to abjure aggressive measures: "We are doctors, and we're here to do what doctors do, regardless of whether or not we ourselves have to live with the long-term consequences." Despite her love for her daughter, Maroney says that if she learned her next child were expected to arrive very prematurely, "I would not save her. I don't believe putting them through the pain and suffering is worth it." There are no absolute answers to the dilemma posed by this premature miracle — only choices. But choices involve consequences. And only now, as results emerge from a mass of new research on the long-term outcome of neonatal intensive care, are these consequences becoming clear. March 9, 1998
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The Sociology and Ethics
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At the turn of the 20th century, there was little that a physician could do for premature infants except keep them warm, feed them breast milk, isolate them from strangers and each other, weigh them daily, and hope for the best. In fact, many premature infants were cared for at home, with incubators that were built from scrap materials as necessary or rented for the occasion.
As technology became more complex, and care of infants became the exclusive domain of specialized units within hospitals, the sociology and ethics of neonatal care became more complex as well. Many tragic episodes in the history of neonatology testified to the dangers of aggressive treatment for treatment's sake, or the rash adoption of new techniques or drugs without carefully controlled trials. Parents and breastmilk were excluded in favor of formulas and antiseptic, controlled environments.
At the turn of the 21st century, the importance of parental participation and breastmilk are again fully recognized. "Rooming in" and even "Kangaroo care" are bywords. But the questions of "who is the best advocate for the baby" and "when is the extraordinary use of technology appropriate" and "what is an acceptable outcome" have become increasingly unclear, blurred further by the application of concepts like "cost-effectiveness" to critical care, even as our ability to rescue incredibly small infants has continued to improve.
We've listed a number of books and articles on this page for further reading in the sociology and ethics of neonatology. A variety of viewpoints are represented here and no endorsement is implied for any of them.
"Newborn Medicine and Society," by Murdina MacFarquhar Desmond, Eakin Press, 1998. ISBN 1-57168-219-8.
"Mixed Blessings: Intensive Care for Newborns," by Jeanne Harley Guillemin and Lynda Lytle Holmstrom, Oxford University Press, 1986. ISBN 0-19-50432-5.
"Playing God in the Nursery," by Jeff Lyon. W. W. Norton, 1985. ISBN 0-393-01898-9.
"A Time to Be Born, A Time to Die," by Rasa Gustaitis and Ernle W. D. Young, Addison-Wesley, 1986. ISBN 0-201-11555-7.
"Deciding Who Lives: Fateful Choices in the Intensive-Care Nursery," by Renee R. Anspach, University of California Press, 1993. ISBN 0-520-05268-4.
"Coping with Caring for Sick Newborns," by Richard E. Marshall, Christine Kasman, and Linda S. Cape, W. B. Saunders Co., 1982. ISBN 0-7216-6122-X.
"To Treat Or Not To Treat: Bioethics and the Handicapped Newborn," by Richard C. Sparks, Paulist Press, 1988. ISBN 0-8091-2993-0.
"Selective Nontreatment of Handicapped Newborns," by Robert Weir, Oxford University Press, 1984. ISBN 0-19-503396-5.
"Retrolental Fibroplasia: A Modern Parable," by William A. Silverman, Grune and Stratton, 1980. ISBN 0-8089-1264-X.
"Mothers and Medicine: A Social History of Infant Feeding," by Rima D. Apple, University of Wisconsin Press, 1987. ISBN 0-299-11484-8.
"Maternal-Infant Bonding," by Marshall H. Klaus and John H. Kennell, C. V. Mosby Company, 1976. ISBN 0-8016-2630-7.
"Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine," by Albert R. Jonsen et al, McGraw-Hill Inc., 1992. ISBN 0-07-105392-1.
"Where's the Evidence? Debates in Modern Medicine," by William A. Silverman, Oxford University Press, 1998. ISBN 0-19-263088-1.
"Decision Making in the Neonatal Intensive Care Environment," by R. P. A. Rivers, British Medical Bulletin 52(2):238-245, 1996.
"The Changing Nature of Neonatal Ethics in Practice," by Kathy Kinlaw, Clinics in Perinatology 23(3):417-428, September 1996.
"Critical Issues in Newborn Intensive Care: A Conference Report and Policy Proposal," by A. R. Jonsen et al, Pediatrics 55(6):756-768, June 1975.
"The Neonatal Nurse Practitioner," by Thomas L. Slovia et al, American Journal of Diseases of Children 128:310-314, Sept. 1974.
"The Role of the Pediatric Nurse Practitioner in a Neonatal Unit," by Enrique M. Ostrea et al, Journal of Pediatrics 86(4):628-631, April 1975.
"At the Bedside," by John H. Talbott, New England Journal of Medicine 277(3):109-114, July 20, 1967.
"Restraining the Unsustainable," by WIlliam A. Silverman, MD, Pediatrics 111(3):672-674, March 2003.
"Born-Alive Infants Protection Act of 2001, Public Law No. 107-207," American Academy of Pediatrics Neonatal Resuscitation Program Steering Committee, Pediatrics 111(3):680-681, March 2003.
"Perinatal Care at the Threshold of Viability," by Hugh MacDonald, MD and the AAP Committee on Fetus and Newborn, Pediatrics 110(5):1024-1027, November 2002.
"Attitudes of Parents and Health Care Professionals Toward Active Treatment of Extremely Premature Infants," by David L. Streiner et al, Pediatrics 108(1):152-157, July 2001.
"Treatment Decisions for Newborns at the Threshhold of Viability: An Ethical Dilemma," by Robin W. Doroshow et al, Journal of Perinatology 20:379-383, 2000.
"Perinatal Care at the Threshhold of Viability," by the Committee on Fetus and Newborn, American Academy of Pediatrics, Pediatrics 96(5):974-976, November 1995.
"The Extremely Low Birthweight Infant: Ethical Issues in Treatment," by V. Y. H. Yu, Australian Paediatric Journal 23:97-103, 1987.
"Ethical Dilemmas in the Treatment of the Extremely Low Birth Weight Infant," by Gordon B. Avery, Clinics in Perinatology 14(2):361-365, June 1987.
"Ethical Issues in Caring for Tiny Infants," by Kenneth L. Vaux, Clinics in Perinatology 13(2):477-484, June 1986.
"Is More Neonatal Intensive Care Always Better? Insights From a Cross-National Comparison of Reproductive Care," by Lindsay A. Thompson et al, Pediatrics 109(6):1036-1043, June 2002.
"The Relation Between the Availability of Neonatal Intensive Care and Neonatal Mortality," New England Journal of Medicine 346(20):1538-1544, May 16, 2002.
"Restricting Access to Neonatal Intensive Care: Effect on Mortality and Cost Savings," by J. W. Stolz and M. C. McCormick, Pediatrics 101(3 Pt 1):344-348, March 1998.
"The Cost of Care of the Less-than-1000-gram Infant," by J. A. Hernandez et al, Clinics in Perinatology 13(2):461-476, June 1986.
"Cost-Effectiveness of Care for Very Low Birth Weight Infants," by J. Rogowski, Pediatrics 102(1 Pt 1):35-43, July 1998.
"Neonatal Intensive Care and Cost-Effectiveness," by G. W. Chance, CMAJ 139(10):943-946, November 15, 1988.
"Costs and Benefits of Neonatal Intensive Care," by P. O. Pharoah et al, Arch. Dis. Child. 63(7 Spec No):715-718, July 1988.
"Measuring the Cost of Neonatal and Perinatal Care," by J. Rogowski, Pediatrics 103(1 Suppl E):329-335, Jan. 1999.
"Cost of Neonatal Intensive Care for Very-Low-Birthweight Infants," by B. Sandhu et al, Lancet 1(8418):600-603, March 15, 1986.
"Ethical Issues Surrounding Resuscitation," by Robert J. Boyle and John Kattwinkel, Clinics in Perinatology 26(3):779-792, Sept. 1999.
"Decisions Regarding Resuscitation of the Extremely Premature Infant and Models of Best Interest," by Steven R. Leuthner, Journal of Perinatology 21:193-198, 2001.
"Ethical Decisions in the Delivery Room," by Jay P. Goldsmith et al, Clinics in Perinatology 23(3):529-550, Sept. 1996.
"Death in the Intensive Care Nursery: Physician Practice of Withdrawing and Withholding Life Support," by Stephen N. Wall and John Colin Partridge, Pediatrics 99(1):64-70, January 1997.
"Analgesia for Dying Infants Whose Life Support is Withdrawn or Withheld," by John Colin Partridge and Stephen N. Wall, Pediatrics 99(1):76-79, January 1997.
"Foregoing Intensive Care Treatment in Newborn Infants with Extremely Poor Prognoses," by Richard de Leeuw et al, Journal of Pediatrics 129:661-666, 1996.
"Neonatologists Judge the 'Baby Doe' Regulations," by Loretta M. Kopelman et al, NEJM 318(11):677-683, March 17, 1988.
"The Baby Doe Rule," by David K. Stevenson et al, JAMA 255(14):1909-1912, April 11, 1986.
"Guidelines for Infant Bioethics Committees," by the Infant Bioethics Task Force and Consultants, Pediatrics 74(2):306-310, August 1984.
"Ethical Dilemmas in Perinatal Medicine," by Mildred T. Stahlman, Journal of Pediatrics 94(3):516-520, March 1979.
"Historical Perspectives: Unanticipated Consequences of Early Advances in Newborn Medicine," by Paul Toubas, AAP Perinatal Section News 27(2):1-3, August 2000.
"Human Experimentation in Perinatology," by William A. Silverman, Clinics in Perinatology 14(2):403-416, June 1987.
"International Practices in Neonatology," by Edmund G. Howe, Journal of Clinical Ethics 12(3):282-289, Fall 2001.
"Overtreatment of Neonates? A Personal Retrospective," by William A. Silverman, Pediatrics 90(6):971-976, December 1992.
"Medical Inflation," By William A. Silverman, Perspectives in Biology and Medicine 23(4):617-37, Summer 1980.
"Wrong Turns in Sudden Infant Death Syndrome Research," by Abraham Bergman, Pediatrics 99(1):119-121, January 1997.
"The Principles for Family-Centered Neonatal Care," by Helen Harrison, Pediatrics 92(5):643-650, November 1993.
"Parental Discretion in Refusal of Treatment for Newborns: A Real but Limited Right," by John J. Paris and Michael D. Schreiber, Clinics in Perinatology 23(3):573-582, September 1996.
"The Socially Complex Family: New Dilemmas for the Neonatal Social Worker," by Donna P. Carson, Clinics in Perinatology 23(3):609-620, September 1996.
"Biomedical Technology: To Use or Not to Use?" by Yves W. Brans, Clinics in Perinatology 18(3):389-401, Sept. 1991.
"The Safe Introduction of New Technologies into Neonatal Medicine," by Reese H. Clark, Clinics in Perinatology 23(3):519-528, September 1996.
"Evaluation of Neonatal Intensive Care Technologies," by Jeffrey D. Horbar and Jerold F. Lucey, The Future of Children, Spring 1995, pages 139-161.
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