Individualized parental counseling focused on presenting a wide range of information and options is key factor in effective collaborative care for extremely preterm infants, says AAP.
There is a lot more to consider than gestational age (GA) when it comes to decision-making for extremely preterm infants, and an updated clinical report from the American Academy of Pediatricians (AAP) stresses the importance of individualized, collaborative efforts between clinicians and families in determining a plan of care.
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“The clinician should understand that GA determination is imprecise, and the inherent error in estimate can make a huge difference in perinatal outcome for fetuses in the late second or early third trimester (22 to 25 weeks of gestation),” says James Cummings, MD, FAAP, a member of AAP’s committee on fetus and newborn. “Second, GA is only one determinant of outcome, and one should consider other relevant fetal and maternal conditions. Given these limitations of GA in predicting outcome, decision-making in each case should be individualized and not solely based on GA estimate.”
There are many difficult questions surrounding the anticipated birth of an extremely low GA infant. The AAP previously addressed antenatal counseling at the borderline of viability (22 to 24 weeks GA) in a 2009 clinical report, but new research and evolving attitudes of both parents and clinicians were included in the new update.
Decisions such as whether to initiate resuscitation after delivery are driven by a number of factors including variations in practice, unclear outcomes, individual bias, and difficulty in communicating complex information in an emotionally charged environment.
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For infants born at extremely immature stages of development, there is a significant risk of death or severe long-term neurologic impairment leading some to believe resuscitation and life support for these infants may be either futile or not in the best interest of the child, according to the report. Translating these risks into clinical practice and shared decision-making with families are a challenge, however.
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“The primary goal of antenatal counseling in this situation is to allow parents to make an informed decision regarding intervention. In addition, counseling can provide parents with knowledge and support that will help them manage what will likely be a difficult aftermath,” according to the clinical report. “Effective counseling includes 3 key components: assessment of risks, communication of those risks, and ongoing support. In addition, factors that may influence decision-making need to be carefully considered.”
Outcomes are generally poor and involve significant neurologic impairment for infants born before 23 weeks GA, even when intensive interventions are performed, according to the report. Perinatal interventions including antenatal steroids and neonatal resuscitation can have positive effects, but usually when survival is the only factor. Most preterm infants born before 25 weeks GA will still have some degree of neurodevelopmental impairment or other life long health problems, according to data collected by AAP.
For infants born at 22 weeks GA, moderate to severe neurodevelopmental and other special health care needs occur in 85% to 90% of cases, and the risks of developmental impairments may outweigh the benefit of survival for some parents.
“If a decision is made not to resuscitate a newborn, it is important to provide comfort care, encourage the family to spend time with the dying/deceased newborn, and offer religious, psychosocial, and palliative supports,” Cummings says.
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Gestational age is not the only factor to consider, though. The AAP suggests that between 22 and 25 weeks GA, the fetus is in a rapid stage of development, and the individual rate of development and the inaccuracies in determining true GA play a role in the child’s outcome.
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“Each additional day of gestation theoretically increases not only the chance of survival but also the chance for a healthy long-term outcome,” the report notes. “However, in most situations, the physician cannot know the gestational age with this degree of precision. Wide variability in an individual woman’s ovulatory cycle and vaginal bleeding during the first weeks of pregnancy can make pregnancy dating according to last menstrual period inaccurate.”
Gestational age is most accurately determined in cases of assisted reproduction, but these account for only 2% of pregnancies.
The clinical report notes that it is generally advised that comfort care alone be offered to infants born before 22 weeks GA, and that resuscitation be offered at infant born at 25 weeks GA or later. The result of that consensus, however, is a “gray zone” between 22 and 24 weeks gestation, says AAP, and recommendations for that time period vary and should be guided by a number of considerations.
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These considerations include pregnancy and preconception factors that may alter fetal growth such as maternal age, nutrition, and genetics.
The attitudes of healthcare providers play a big role in influencing parental decision-making, but AAP says there is no general consensus about the GA at which proactive interventions should be performed. Proactive measures including the use of antenatal steroids are associated with improved outcomes, and without these measures mortality rates in infants born before 25 weeks GA are increased, according to the report.
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Physicians are generally more positive about outcomes for infants born at 24 weeks gestation than 22 weeks, but AAP says obstetricians and neonatologists are increasingly more positive in their estimations of morbidity and mortality for extremely preterm infants than they have been in the past.
Many physicians adopt a “wait and see” attitude on resuscitation at delivery, but the clinical report recommends that decisions be discussed and agreed on before the birth.
“Decision-making in the delivery room delays the initiation of resuscitation and is prone to error,” states the clinical report. “For example, when experienced neonatologists viewed delivery room videos of extremely preterm births, their ability to predict survival was no better than a coin toss.”
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For parents, those who have raised a child born at an extremely low GA report only moderate stress increases and rate the health and quality of life of their children fairly high, despite less than ideal predications at birth, according to the report. So despite education about survival rates and the chances of negative long-term outcomes, AAP finds that parents do not solely rely on predictions of death or morbidity in their decision-making about interventions. Religion, spirituality, hope, and cultural difference appear to play a greater role in the decisions of parents that physician counseling alone, says AAP.
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A barrier to effective parental communication and shared decision-making, however, is the limited amount of time to prepare and counsel parents when and extremely preterm birth occurs.
Physician antenatal counseling should focus on expected outcomes, but also on the available options for the infant-including comfort care, says AAP. Communications must also be sensitive to the parents’ religious, social, cultural, and ethnic backgrounds.
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The clinical report notes that statistical information delivered to parents of preterm infants is often misunderstood, and the value of providing that data is unclear. Supplementing verbal counseling along with written information and visual aids generally improve parental understanding of outcomes, but it is most important that parents receive ongoing support before and after delivery regardless of the interventions used.
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“Given our limited ability to predict either short or long-term outcomes in any individual case, decision-making should be shared between parents and providers, with special consideration for parental beliefs regarding the best interest of their child,” Cummings says. “To facilitate and optimize shared decision-making several things are necessary, including accurate up-to-date local statistics, joint discussions between the parents and both obstetric and neonatal care providers, and recognition and management of barriers to communication, including language, cultural, or physical barriers. Interpreters and visual aids may assist in effective communication.”
The report concludes that while GA is an imprecise predictor of neonatal outcomes, 22 weeks GA is generally accepted as the lower threshold for survival. Also, while infants delivered at 22 to 24 weeks GA may die or experience significant developmental problems, individual outcomes are difficult to predict and depend on a number of factors beyond mere GA. As a result, decision making should be discussed prior to delivery and be a collaborative effort between physicians and families, taking into account parental beliefs regarding what is in the best interest of the child.