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.
Books on Sociology and Ethics
"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.
Articles Focused on Caregiver Roles and Decision-Making
"Moral Reflections on Neonatal Intensive Care," by William Meadow and John Lantos, Pediatrics 123(2):595-597, February 2009."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.
Articles Focused on Extreme Prematurity
"Mortality Rates for Extremely Low Birthweight Infants Born in Japan in 2005," by Kazuo Itabashi, MD, et al, Pediatrics 123(2):445-450, February 2009."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.
Articles Focused on Resource Allocation
"The Contribution of Preterm Birth to Infant Mortality Rates in the United States, by William M. Callaghan et al, Pediatrics 118(4):1566-1573, October 2006."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.
Articles Focused on Cost of Care
"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.
Articles Focused on Resuscitation
"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.
Articles Focused on Withdrawing or Withholding Support
"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.
Articles Focused on History and Comparison of Practice
"Cautionary Tales" on the James Lind Library web site, by Dr. William A. Silverman, 2003. (Also available as captured PDF file
)"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.
Articles Focused on Parents
"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.
Articles Focused on Technology
"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.
Created 4/20/2002 / Last modified 6/28/2009
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