Prenatal Consultation at the Limits of Viability

After completing this article, readers should be able to: What is meant by “limits of viability”? Use of the plural, not singular, form of the word “limit” implies some variability in the definition. Nevertheless, most neonatologists would agree that survival of infants younger than approximately 22 to 23 weeks’ estimated gestational age is universally dismal and that resuscitative efforts should not be undertaken when a neonate is born at this point in pregnancy. A woman threatening to deliver at 22 to 24 weeks’ gestational age and her partner face many medical, emotional, and ethical questions, with even more difficult postnatal decisions. What medical professionals should be involved in counseling these women, the nature of the information provided during the consultation, and the training of professionals to handle these challenging situations are the topics of this article.Obviously a woman’s obstetrician or maternal-fetal medicine specialist plays an integral role in caring for, educating, and supporting her when she is in preterm labor. Certainly this professional is the optimal source of information regarding decisions on obstetric issues such as tocolytics (indications for, risks and benefits of) and route of delivery. Others who may participate in such counseling include general pediatricians, pediatric subspecialists, genetic counselors, social workers, and chaplains. However, there is no better medical professional to describe the many aspects of what it means to be born preterm than the neonatologist. The neonatologist not only can describe the immediate threats to life, but also the long-term sequelae of preterm delivery. Unlike pediatric subspecialists, who focus on particular organs or organ systems, the neonatologist is a generalist who has expertise in caring for the entire baby. This is precisely the perspective that is required when discussing birth at the limits of life. Regardless of which professionals provide counseling, everyone involved in speaking with the pregnant woman should communicate frequently with each other so as to provide accurate and consistent information. (1)Although the obstetrician plays a major role in the months and days leading up to delivery, that individual’s role diminishes markedly after birth. Should the parents decide to undertake resuscitation and if their baby survives to be admitted to the neonatal intensive care unit (NICU), they then must interface with a multitude of unfamiliar professionals and intimidating technology. The neonatologist who becomes involved in prenatal consultation can provide continuity and comfort for the parents as they leave the labor and delivery suite for the NICU. Prenatal consultation also benefits the neonatologist. Introduction to difficult concepts prenatally provides the parents with additional time to process this information and may reduce the potential for confusion and indecision during what is often an emotionally and physically draining postnatal experience. This will aid the parents in making truly informed decisions for their immature baby and allow them and the members of the health care team to identify realistic goals. (2)One of the most important issues to discuss when consulting with a woman in labor early in pregnancy involves the uncertainty of gestational age assessment (this is much less of an issue when dealing with a pregnancy that is the result of in vitro fertilization). Even when the results of an ultrasonography performed at 18 to 20 weeks’ estimated gestational age (the clinical gold standard for gestational age assessment) are available, some uncertainty remains. Relatively small discrepancies between estimated and actual gestational age or fetal weight may result in significant differences between projected and actual clinical outcomes. Thus, it should be made clear that any plans for care of the neonate agreed on prenatally may need to be modified (sometimes extensively) after birth if new and more accurate information becomes manifest regarding gestational age and prognosis. Although many problems of prematurity could be discussed during a prenatal consultation, it is wise to focus on those of most immediate relevance. Generally, the clinician should use mortality and morbidity data that are both contemporary and institution-specific. In the absence of such data, it is reasonable to refer to current outcome data generated by national multicenter cooperatives, such as the Neonatal Network of the National Institute of Child Health and Human Development (NICHD). (3) It is easy to overwhelm parents with details during a prenatal consultation. Because the time available to meet with the pregnant woman in active preterm labor may be brief, and her medical condition may compromise her ability to listen to and process such information, it is wise to focus only on key issues during the initial encounter. One extremely important question for parents is, “What are the chances that my baby will survive?” It is best to quote survival data that are specific to the institution. The next question usually is, “If my baby survives, what will his or her life be like?” A good starting point is discussion of the common morbidities that will be of immediate concern after birth: 1) respiratory distress syndrome, surfactant deficiency, and the need for and risks of mechanical ventilation; 2) the risk of sepsis and the importance of broad-spectrum antibacterial coverage; and 3) intraventricular hemorrhage and the risk of neurologic impairment such as mental retardation, cerebral palsy, and developmental delay. This discussion also can introduce the parents to the interventions (intubation, mechanical ventilation, surfactant delivery, antibiotic administration, and cranial ultrasonography) likely to be undertaken in the first days after birth. It also may be appropriate to state that discontinuing support may be an option, if accumulating evidence after birth indicates that intact survival is a remote possibility.Although the ideal is to deliver as much information as soon as possible to parents, the neonatologist must balance the understandable desire to provide comprehensive information with the practical issues of the mother’s health, the parents’ ability to process the information provided, and the time available for prenatal consultation. Therefore, it is reasonable and may be necessary to defer discussion of other conditions and complications that may manifest at a much later date in the hospital course (eg, retinopathy of prematurity) until a subsequent prenatal consultation or after admission to the NICU. Many other pertinent issues require explanation either prior to or after delivery. Feeding strategies, production and storage of human milk, directed donation of blood, and potential length of stay are common concerns for parents. However, it may be inappropriate to raise these issues early in the consultation process, especially if the parents are considering the option of no intervention in the delivery room.In pregnancies where the obstetric team is highly certain that the gestational age is 21 to 22 weeks’, resuscitation should not be offered, and the neonatal team need not be called to the delivery room to attend the birth. A small percentage of neonates born at 22 to 23 weeks’ estimated gestational age survive, but morbidity is extremely high in survivors, and parents should be counseled that aggressive intervention at the time of delivery is not indicated. When the decision is made to forego resuscitation, it is important that the obstetric team be comfortable in delivering routine (“comfort”) care to the neonate (eg, swaddling, maintaining warmth) and supporting the parents before, during and after their baby’s death. Further, arrangements should be made for the neonatal team to be called if the neonate appears to be more mature than originally thought based on the best prenatal information.Counseling parents at 23 to 24 weeks’ gestational age is one of the most challenging situations faced by those caring for the pregnant woman and her fetus and should be handled on a case-by-case basis. (4) Although survival is higher and morbidity lower than at 21 to 23 weeks’ gestational age, it is by no means universally accepted that every neonate at this stage of development should be resuscitated. It is acceptable to forego resuscitation in the delivery room (with the expectation that the neonate will die a comfortable and dignified death in the presence of his or her parents), but it seems wise that someone experienced in gestational age assessment of the very immature neonate be in attendance in the delivery room to confirm the extreme immaturity. Should it appear that the prenatal assessment of gestational age underestimates the maturity level of the infant, it may be appropriate to initiate resuscitative efforts. In fact, if doubt about the degree of immaturity (and, therefore, the risk of mortality and morbidity) of the neonate arises in the delivery room, it is reasonable to initiate resuscitative efforts in an effort to obtain additional information on which to base decisions regarding further care. This approach reduces the risk of not resuscitating a neonate who is at a more advanced gestational age only to see him or her breathe spontaneously and survive in a compromised state due to lack of appropriate intervention.The NICU is a less emotionally charged environment than the delivery room for evaluating gestational age. In addition, it is possible in that domain to secure additional sources of subjective (other experienced physicians and nurses) and objective (chest radiographs, arterial blood gases) markers of gestational age. Indeed, the first hours, days, and weeks after birth for the extremely preterm neonate should be characterized by continuous reassessment.Regardless of whether the decision is to forego or to pursue resuscitation in the delivery room, parents should be informed that any course of therapy, from comfort care to aggressive resuscitation, may need to be altered as additional information about their newborn’s prognosis becomes available. In those cases where resuscitation or continued intensive care is deemed inappropriate, this decision is best reached by parents in consultation with an experienced neonatologist. (5)Traditional medical training is essentially a two-step process. First, trainees read about patients and their diseases; second, they begin to care for patients by attempting to mimic the performance of more experienced colleagues while under varying degrees of supervision. This model of training has been described as “see one, do one, teach one.” (6) Although accepted historically, critical analysis reveals weaknesses in the assumptions underlying this model. The “see one, do one, teach one” model assumes that current methodologies in medical education are optimal for all adult learners and that the close of a training period implies competence on the part of the trainee. Yet, adults learn best by active immersion rather than passive training exercises such as reading or observing others. Although adults have different strengths and weaknesses, traditional training models offer the same content in the same format to all adult learners. This approach suppresses unique contributions from trainees who have different life experiences and may set them up for failure. In addition, adults acquire skills at different rates and retain skills nonuniformly (both technical skills such as intubation and behavioral skills such as those involved in counseling patients and their families). Although standardized training programs designed to enhance the acquisition and maintenance of skills such as cardiopulmonary resuscitation exist, there are no validated, widely accepted programs in nontechnical areas such as interpersonal communication and counseling.The team of medical professionals at the Center for Advanced Pediatric Education (CAPE) at Stanford has developed a number of simulation-based training programs in neonatal, pediatric, and obstetric medicine. (7) Simulation-based training employs the training methodology used for decades by the aerospace industry and involves immersion of trainees in dynamic lifelike scenarios using real equipment in an environment that replicates the real world with high fidelity, followed immediately by interactive debriefings. There are many advantages of simulation-based training over traditional training methodologies. (8) Specific scenarios may be crafted to address specific training needs and may be scaled to challenge both the novice and the expert. Numerous scenarios may be conducted during a single training program, thus providing an intense experience in a relatively short period of time and maximizing the use of time, money, and other resources. The videotape recordings of the scenarios provide unbiased, objective, detailed, time-coded records of the actions of the trainees in the scenarios that are used during the debriefings.In addition to accompanying more experienced colleagues during prenatal consultations, trainees can benefit from participation in simulation-based experiences in counseling. The CAPE team has developed a simulation-based program in which trainees enter a realistic labor and delivery suite and encounter a real human woman who is made up to appear pregnant, lying in a hospital bed and connected to working infusion pumps. She is connected to a patient monitor and a fetal monitor simulator (FetalSim®, Advanced Medical Simulation, Inc, Binghamton, NY). Once immersed in this scenario, the trainee is expected to take a quick history, deliver appropriate information to the patient, and answer any questions she or her partner may have. This type of exercise provides not only a unique and valuable training experience, but also creates a rich environment for human performance research.Birth at the limits of viability creates situations that are extremely complex from both medical and ethical perspectives. The neonatologist is the ideal professional to discuss the implications of severe prematurity with prospective parents as they seek answers to difficult questions. Neonatologists who have expertise and training in this area should be involved routinely in the counseling of women who present in preterm labor early in gestation.