Serious Communication in the Neonatal Intensive Care Unit: Evidence for Strategies and Training

Communication in the Neonatal Intensive Care Unit

Although challenges in communication exist in all areas of medicine, the anticipation and care of critically ill newborns imparts unique communication complexities. More than 20,000 infants die in the newborn period annually in the United States, with the highest rates of mortality arising from complications of prematurity, congenital anomalies, and genetic disorders. Technological advancements in newborn critical care have improved survival of infants with these conditions during the past several decades, but prognostication regarding which of these infants will not survive and which survivors will have life-long developmental impairment remains imperfect. In these situations of expected poor prognosis and marked uncertainty, high-stakes decisions regarding which interventions to provide must be made. Because newborns cannot make their wishes known, surrogates, generally parents, collaborate with physicians to determine appropriate goals of care. These decisions entail discussions of sophisticated information about pathophysiology, medical technology and therapies, statistical risks and outcomes, and personal values. They are also often complicated by strong emotions on the part of parents, stemming from altered expectations for their child’s future and the experience of loss that has become increasingly uncommon in our society and is rarely discussed.

Because of the stressful and emotionally charged nature of decision-making in this context, conflict within and between families and providers is not uncommon in the neonatal intensive care unit (NICU). Disagreements about which course of action best promotes the best interests of the infant are escalated by poor communication in these highly sensitive situations. Sharing bad news is stressful for clinicians and may lead to avoidance of these conversations. Likewise, failure to listen and engage in discussion around disparate perspectives and values in goals-of-care discussions not only can lead to mistrust of the care team by parents but also can preference misdiagnosis and a treatment or outcome that does not align with parents’ wishes. These communication problems negatively impact parents’ NICU experience and perhaps their only memories of their child alive and have serious long-term implications for parents, including grief, decisional conflict, and regret. ^, Additionally, difficulties with communication, particularly about goals of care, and values differences can contribute to moral distress and burnout among caregivers.

Although the communication challenges arising in the neonatal intensive care setting can seem overwhelming, empiric evidence exists for identifying where and how communication problems arise and strategies to mitigate them. This chapter will explore serious communication in the NICU, including advantages and disadvantages of current physician approaches to challenging conversations, how these differ from what parents desire for these conversations, and how to advance practices to improve communication. Two specific examples of challenging, serious communication situations—antenatal consultation for life-threatening diagnoses and goals of care in critical illness and end-of-life decision-making—will be explored, as will teaching these communication skills to clinicians and trainees.

What Clinicians Should Do

Guidelines

A number of guidelines and recommendations exist to assist neonatologists and other care providers in the sensitive discussions that arise in antenatal consultation and end-of-life care. In these situations, neonatal healthcare professionals have the complicated task of determining whether the medical situation warrants shared decision-making or whether the prognosis is so good that resuscitative care is obligated or is so poor that comfort care is the only medically appropriate choice. Prediction of a high likelihood of intact survival necessitates provision of intensive care in the best interests of the infant; likewise, a certain prognosis of nonsurvivability necessitates comfort care ( Fig. 89.1 ). In these situations, parents should be involved in close, sensitive communication about what to expect but should not be presented with options that are ethically impermissible. When prognosis is uncertain, however, and death or disability is likely, medical facts alone cannot inform which option is in the clear best interest of the infant. In these cases, multiple different goals of care might be appropriate, and decisions should be based on the parents’ values that frame their perceptions of the possible outcomes.

In situations of anticipated extreme prematurity, the delineations of when intensive therapy is obligated, recommended, optional, or inappropriate are seemingly clearer than for antenatal decisions for fetal anomalies and genetic conditions. Epidemiologic outcome data exist for infants born at these gestational ages, and professional society guidelines have recommended gestational age thresholds bounding parental authority based on these statistics. ^{, ,} Debate exists, however, about whether simplistic rules are appropriate for determining ethically permissible care options. Although this gestational age approach facilitates standardization in counseling, gestational dating is imprecise, and other factors impact morbidity and mortality, including sex, fetal weight, plurality, administration of antenatal steroids, and reason for delivery. Individual characteristics of the infant, mother, and medical provider may be difficult to quantify but nevertheless cannot be ignored in considering therapeutic options.

For antenatal consultation for a serious fetal anomaly or genetic condition, neonatal providers must also determine where the ethical boundaries of resuscitation options fall, although epidemiologic data are usually unavailable. ^{, ,} Variability in the types, combinations, and degree of severity of anomalies, particularly if complicated by growth restriction or the heightened risk of premature delivery, make prognostication difficult. Additionally, existing survival data for many of these conditions are potentially biased by the “self-fulfilling prophecy,” in which life-saving interventions are categorically withheld, reinforcing the perception that the condition is uniformly lethal. Clinicians often must rely on available information from obstetric imaging and experiential knowledge of outcomes for this population, an approach that is inherently imperfect. Although some condition-specific recommendations for antenatal counseling exist, contemporary care practices have shifted during the past 15 years toward deferring to parents’ values to guide resuscitation decisions for infants with uncertain prognoses or who have conditions with a high risk of morbidity and mortality, such as trisomy 13 and trisomy 18.

Professional society statements for management of end-of-life care provide guidance for clinicians on withdrawing or forgoing therapies such as artificial nutrition or other supportive interventions when these treatments are felt to be nonbeneficial or will not achieve a desirable outcome in terms of length or quality of life. ^{, , ,} These guidelines do not prescribe clear thresholds of when life-prolonging care may be appropriately withheld or withdrawn but rather encourage shared decision-making between parents and healthcare professionals in these situations. Clear communication, particularly about code status and expectations for ongoing interventions, is strongly endorsed, although specific guidance on how to engage in these conversations is not explicitly provided.

Shared Decision-Making

Although the shared decision-making approach is ubiquitously championed for communication about resuscitation and end-of-life care for all patients, what shared decision-making entails and how to best employ it in practice remains elusive for critically ill newborns. In an American College of Critical Care Medicine and American Thoracic Society policy statement, Kon and coauthors define shared decision-making as “a collaborative process that allows patients, or surrogates, and clinicians to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient’s values, goals, and preferences.” In the NICU, these decisions are typically shared between clinicians and parents/families because these patients cannot make their wishes known. Three key procedural stages are recommended. The first is information exchange, in which clinicians share medical information and parents share their values, goals, and preferences. This is followed by a period of deliberation, in which opinions are shared, questions are asked, and misconceptions are corrected by both parties in determining the most appropriate treatment option for the patient. Finally, the care team and parents agree on a treatment decision based on the most preferable option.

Tailoring the process to specific needs of the decision-makers is emphasized in this statement, because families’ desire for decisional authority is variable between families and in different decision contexts. Although most prefer that decisional responsibility be shared equally or nearly equally with clinicians, a nontrivial minority wish to have significantly more or less control in the decision-making process. It is therefore appropriate that when a family clearly understands their values and is comfortable assuming greater independence, allowing them to choose from among the medically acceptable options may be appropriate. Conversely, if the patient or parent/surrogate has been emotionally or psychologically averse to assuming a strong role in decision-making, a higher degree of clinician involvement in the decision may be warranted ( Fig. 89.2 ). Parents’ preferences for decisional authority may also change over time, based on changes in the patient’s clinical status, familiarity with medical information and decisions made, and trust in the care team.

The Shared Decision-Making in ICUs Policy Statement also notes the importance of communication, both for explaining medical facts and for eliciting families’ values. Providers are encouraged to explain medical options in understandable terms and ask for families to explain back their understanding. Likewise, facilitating dialogue in which families consider and share their values is an essential skill for healthcare professionals, because these values may conflict, be difficult to articulate, and change over time. The recommendations also highlight providing emotional support to families by acknowledging strong emotions and expressing empathy, although specific behaviors to employ these skills in practice are not described. Although basic components of good communication, such as ensuring adequate seating for all participants, moving the discussion away from the bedside when surrogate families are making decisions for incapacitated patients, using the patient’s name, and minimizing distractions can be modified, none of these strategies teach a clinician to authentically feel empathy. Although continued research in this area has the potential to support practice, role-modeling, and education, no single approach can account for fundamental variation among providers, and the expectation of a single standardized method for conducting these conversations is not realistic.