Decisions and Dilemmas Related to Resuscitation of Infants Born on the Verge of Viability

Traci L. Powell, MSN, NNP; Leslie Parker, PhD, NNP-BC; Cynthia F. Dedrick, PhD, NNP; Christina M. Barrera, MSN, NNP; Dawn Di Salvo, MSN, NNP, CLC; Felicia Erdman, MSN, NNP; Salley P. Huff, RN, BSN; Mahala Saunders, MSN, ARNP

Disclosures

NAINR. 2012;12(1):27-32. 

In This Article

Decisions Regarding Resuscitation of Infants at the Edge of Viability

Any decision regarding resuscitation of infants at the limits of viability is complex and begins with defining limits of viability. According to Webster, viability is "having attained such form and development as to be normally capable of surviving outside the mother's womb."[12] In general, viability refers to the gestational age when a fetus reaches an anatomical threshold when critical organs, such as the lungs and kidneys, can sustain life.[13] The Nuffield Council on Bioethics specifically defines the borderline of viability as an infant born at or before the gestational age of 25 weeks.[4] More commonly, the limit of viability has been defined as the age of fetal maturity that ensures a reasonable chance of extrauterine survival given technological support.[10] Seri and Evans[13] have made the latter definition more specific by suggesting that viability is the age at which the infant has a 50% chance of long-term survival. In 2002, the Federal Government entered the viability discussion by enacting the Born Alive Infants Protection Act, stating the term "born alive" means "the complete expulsion or extraction from his or her mother of that member, at any stage of development, who after such expulsion or extraction breathes or has a beating heart, pulsation of the umbilical cord, or definite movement of voluntary muscles."[14]

Neonatal nurses, nurse practitioners, neonatologists, and obstetricians have long recognized that there are other factors relevant to the viability of the extremely premature neonate, and reliance on estimated gestational age alone may not truly reflect an accurate prognosis. This is particularly true given the difficulties of accurate gestational age estimation. Measurement error in fetal gestational age assessment during the first trimester using ultrasonography is only a few days, but after the first trimester, error can be as great as plus or minus 2 weeks.[15,16] Fetal weight estimation by ultrasound has a measurement error of 15% to 20%.[17] For infants born at the borderline of viability, a difference of 2 weeks or 15% to 20% on weight could have a significant impact on the decision whether to initiate resuscitation. The difficulty of establishing viability based on gestational age and weight alone indicates that an individualized approach including other factors needs to be considered. These factors include accessibility to a tertiary perinatal care center, birth weight, sex, singleton vs multiple gestation, and exposure to antenatal corticoid steroids.[18]

Accessibility to a tertiary perinatal care center equipped to provide appropriate technological support has a positive impact on both mortality and morbidity of neonates at the borderline of viability. Aksit et al[10] reported that improvement in survival at tertiary centers for neonates born before 25 weeks gestational age is equivalent to delivering 1 week later at nontertiary centers. This has lead to an increase in earlier referrals or transfers to a tertiary center for management of women in preterm labor or those who are threatening early delivery.[10] The Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network examined a cohort of neonates born between 22 and 25 weeks gestation and found that the four factors of higher birth weight, female sex, singleton gestation, and exposure to antenatal corticoid steroids had a strong impact on mortality and morbidity.[16] Each of these factors individually was associated with reductions in mortality and morbidities similar to the reductions associated with an additional week of gestation.[16] Although these factors were not evaluated additively, the authors found models using these four factors significantly more accurate in predicting morbidity and mortality than those using gestational age alone (P < .001).[16]

Professional standards and recommendations provided by the Neonatal Resuscitation Program (NRP), the American Academy of Pediatrics (AAP), the Nuffield Council on Bioethics, and the International Liaison Committee on Resuscitation continue to provide guidelines based primarily on estimated gestational age but provide further guidance when the gestational age is estimated to be in the "gray zone." The term gray zone has been used to define the borderline of viability both for the uncertainty of survival and the uncertainty regarding the appropriate ethical approach to treatment.[19] The AAP advises practitioners to base resuscitation decisions on an assessment of the infant's physiologic maturity at delivery in addition to coexisting medical conditions (ie, presence of birth defects or severe anomalies) and probabilities of death and/or severe disability.[20] Basing decisions on the infant's physiologic status at time of delivery has been shown to be problematic. Because of differing rates of maturation, it is not always possible to accurately differentiate an infant born at 23 weeks from one born at either 22 or 24 weeks based on physical examination.[21]

The NRP endorses the American Medical Association's code of ethics and offers recommendations for decision making when faced with resuscitation of a newly born infant. Specifically, the NRP states that resuscitation should be withheld when the gestational age is less than 23 weeks, birth weight is less than 400 grams, anencephaly is present, or with a confirmed diagnosis of trisomy 13 or 18.[17] The Nuffield Council on Bioethics recommends that resuscitation and intensive care should not be provided to infants at a gestational age of less than or equal to 22 weeks unless the "informed" parent requests it and clinicians agree it is likely in the best interest of the infant. For infants at 23 weeks, they recommend allowing the parents to choose whether to resuscitate, but the medical team is not required to resuscitate or provide intensive care if they feel it does not benefit the infant. At 24 weeks, resuscitation and intensive care should be provided but may be withheld based on the infant's condition and if both the parents and medical team agree it is not in the infant's best interest. At 25 weeks or more, it is recommended that intensive care be provided.[4]

Adding to the complexity of decisions regarding resuscitation is the interests of the stakeholders involved. In an ideal situation, parents and caregivers work as a team, making decisions in the best interest of the infant. The NRP guidelines state that, in situations where an uncertain prognosis exists, survival is borderline, morbidity rate is relatively high, and the anticipated burden to the infant is high, we should support parental desires regarding initiation of resuscitation.[17] However, multiple factors influence the beliefs and opinions of parents regarding resuscitation of a marginally viable infant.

For parents to make informed decisions regarding resuscitation of a marginally viable infant, a complete understanding of the situation is necessary. Often, the decision to resuscitate is made in the context of an imminent and unplanned delivery. This, together with an uncertain prognosis, makes informed consent nearly impossible, often resulting in confusion and misunderstanding. Boss et al[22] interviewed mothers whose infants were either extremely premature or had lethal anomalies. They found that despite documented discussions regarding delivery room resuscitation and/or comfort care measures, few mothers recalled these discussions. Moreover, parents stated that information regarding the possibility of death or morbidities had little impact on decisions related to resuscitation. Instead, decisions were guided by religion, spirituality, and hope, often saying they left things "in God's hands."[23]

Perhaps educating parents concerning the potentially severe consequences of extremely preterm delivery well before delivery, in a stress-free situation, could assist them to understand the full scope of the situation. Catlin[23] states that prenatal education should include a discussion regarding fetal development, including the consequences of birth at various gestational ages. This would allow parents an opportunity to ask questions and consider how their spiritual and personal beliefs may impact decisions.[23] Catlin further suggested that parents should be provided an opportunity to prepare a prenatal advanced directive to guide care provided if their infant was delivered at the limits of viability. Preparing an advanced directive would allow fully informed parents time to consider their desires for treatment if their child was delivered extremely premature.[23] Tomlinson et al[24] presents a standardized approach to preparing expectant parents as well as the health care team for the delivery of a marginally viable infant. Counseling guidelines were developed from evidence-based outcomes for infants at varying gestational ages and a survey of caregivers regarding resuscitation at each gestational age.[24] These guidelines are used to offer recommendations for and against treatment. Parents stated that they valued this standardized approach to counseling and felt comfortable that the decisions they made before delivery were the right decisions for them.[24]

The attitudes and beliefs of health care providers may also influence the parent's final decision concerning resuscitation. It is important for health care providers to realize that their religious, emotional, and personal experiences can impact treatment decisions. Weiss et al[25] surveyed neonatologists to determine what subjective criteria influenced their decision to resuscitate infants on the borderline of viability. Parental desire to resuscitate and ethics education during medical training, specifically related to the notion of beneficence and doing what is in the infant's best interest, were identified as criteria important in their decision process. The fear of litigation, however, was the most important subjective factor in deciding to resuscitate, especially against parental wishes.[25] Since the enactment of the Born Alive Infants Protection Act, which states the words "person," "human being," "child," and "individual," when they appear in laws and legislation "shall include every infant member of the species Homo sapiens who is born alive at any stage of development," concerns have been expressed that withholding medical treatment from any infant born alive could result in litigation.[26] conducted a study of Canadian neonatologists to assess overall attitude related to parental decision-making authority in regard to resuscitation and found that although physicians stated that they placed the wishes of parents in high regard, over two-thirds stated that the infant's best interest should ultimately be defined by the neonatologist.

The AAP Committee on Fetus and Newborn states that physicians should respect the rights of parents to make decisions for the infant; however, physicians must not be required to treat or not treat, if their best medical judgment determines that the parental wishes do not align with the standard of care for the infant.[20] However, according to Mercurio,[27] there is no standard for infants born on the edge of viability. As previously stated, many factors surrounding the pregnancy must be considered when deciding whether to resuscitate, and each situation is different. It is not until the infant is born, assessed, and all factors taken into account that a final decision can be made. Furthermore, another factor to be considered is the potential effect on the entire family. The impact a surviving infant with severe morbidities has on one family may be much greater than it would have on another. If a parent's decision to not resuscitate is overruled by the medical team, the family's entire life will be affected by a child with severe disabilities.

Another consideration regarding resuscitation of very premature infants is the possibility of withdrawal of support after stabilization of the infant. Some health care providers contend that the decision to withdraw support is much more difficult than the decision to begin resuscitation. The NRP response to this dilemma is "Noninitiation of resuscitation and discontinuation of life-sustaining treatment during or after resuscitation are ethically equivalent, and clinicians should not hesitate to withdraw support when functional survival is highly unlikely."[15] Tertiary care centers have become proficient at resuscitating infants at the borderline of viability without a corresponding decrease in morbidity.[21,28]

Perhaps an appropriate approach to resuscitation of infants of questionable viability should be the suggestion of Aksit et al[10] that resuscitation be understood as an intervention with two goals, the first being short-term to prevent imminent death, followed by a long-term goal to minimize morbidity and maximize functional status. It is their recommendation that clinical intervention be initiated and continued only so long as these goals are reasonably expected to be accomplished.[10] Based on these guidelines, a large burden is placed on the health care team, not just on evaluating viability but in determining how to engage in effective shared decision making that avoids initiating or continuing treatment that imposes an intolerable burden upon the infant.

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