Who Should Decide the Survivability of Newborns?
Among the most controversial of medical issues is the resuscitation of newborns that are unlikely to survive. The Born-Alive Infants Protection Act (BAIPA), enacted in 2002, and the enforcement guidelines later issued by the United State’s Department of Health and Human Services (DHS) outlined clinical procedures to be used in the resuscitation and care of infants born between 20 and 24 weeks gestation. (A normal, full-term pregnancy is 37 to 42 weeks of gestation.) This act has gained remarkably limited attention, and many neonatologists are not familiar with the act or DHS guidelines concerning its enforcement. A recent study published in Pediatrics suggested that most neonatologists surveyed did not agree with the legislation, but that it did have the power to change medical practice if it was enforced.
The BAIPA was initially understood to be antiabortion legislation, granting legal status to all live-born infants in the United States, regardless of whether birth was spontaneous, by Cesarean section, or induced by an elective abortion. Immediately after the passage of the BAIPA, the Neonatal Resuscitation Program Steering Committee issued an opinion that the law should not change neonatology practice with respect to the extremely premature infant. However, the DHS soon released enforcement guidelines that threatened investigations of violations of long-standing regulations — the Emergency Medical Treatment and Labor Act and the Child Abuse Prevention and Treatment Act — if any lay observer claimed that medical care was withheld from a newborn. The enforcement guidelines did not include a stipulation for a physician’s medical training and knowledge to prevail over the layperson’s observations. With the threat of hefty fines and litigation, many physicians and hospitals worry about the day when the BAIPA will actually be enforced.
The last several decades have seen vast improvements in technology and understanding of neonatal physiology, but surprisingly minor improvements in the actual survivability of extremely premature and low birth weight babies. Much debate still surrounds the gestational age and birth weight limits used to identify an infant’s ability to survive outside of the mother’s womb. In most cases, survival of infants born at less than 25 weeks gestation is unlikely. Most practitioners agree that aggressive measures of resuscitation for newborns born at less than 23 weeks gestation is futile and unwarranted. In such cases, neonatologists are more likely to provide comfort care to the infant and the family until the infant dies naturally.
The decision to resuscitate a newborn that is unlikely to survive is a complex one that should involve physicians, other health care professionals, and parents. However, these decisions must also be made quickly. In these cases, timely and appropriate decision-making can decide whether an infant dies, survives with impairment, or survives intact. The consequences of the decisions — positive or negative –- are almost immediate. Medical professionals bring their judgment and experience, as well as perceived obligations and legal mandates to the decision-making; parents bring cultural, personal, ideological, and religious beliefs to the decision-making. Who should be permitted to make the final judgment of what treatment is in the best interest of the child?
The American Academy of Pediatrics recommends that neonatologists perform complete prenatal consultations with parents in the likelihood of an extremely premature birth. Most physicians are comfortable discussing clinical issues with parents, but far fewer are comfortable discussing quality-of-life issues, expected long-term outcomes, or parental preferences. Physicians should provide parents with the medical information necessary for informed decision-making, and but should also foster parental involvement in the care of their child. A framework for newborn resuscitation may be necessary to clarify each practitioner’s role in the care of likely nonviable newborns, and to aid in decision-making, but the government should not be mandating medical procedures or making therapeutic decisions in a complex life or death decision of a child.
Campbell, D., & Fleischman, A. (2001). Limits of Viability: Dilemmas, Decisions, and Decision Makers American Journal of Perinatology, 18 (03), 117-128 DOI: 10.1055/s-2001-14530
HUSSAIN, N., & ROSENKRANTZ, T. (2003). Ethical considerations in the management of infants born at extremely low gestational age Seminars in Perinatology, 27 (6), 458-470 DOI: 10.1053/j.semperi.2003.10.005
Partridge, J., Sendowski, M., Drey, E., & Martinez, A. (2009). Resuscitation of Likely Nonviable Newborns: Would Neonatology Practices in California Change if the Born-Alive Infants Protection Act Were Enforced? PEDIATRICS, 123 (4), 1088-1094 DOI: 10.1542/peds.2008-0643
Sayeed, S. (2005). Baby Doe Redux? The Department of Health and Human Services and the Born-Alive Infants Protection Act of 2002: A Cautionary Note on Normative Neonatal Practice PEDIATRICS, 116 (4) DOI: 10.1542/peds.2005-1590
Lakshminrusimha S, Carrion V. Perinatal phsyiology and principles of neotal resuscitation. Clin Ped Emerg Med. 2008;9:131-139.
Bastek, T. (2005). Prenatal Consultation Practices at the Border of Viability: A Regional Survey PEDIATRICS, 116 (2), 407-413 DOI: 10.1542/peds.2004-1427
Partridge, J. (2005). International Comparison of Care for Very Low Birth Weight Infants: Parents’ Perceptions of Counseling and Decision-Making PEDIATRICS, 116 (2) DOI: 10.1542/peds.2004-2274
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