KEY POINTS
- 1.
With a high incidence of morbidity and mortality, the care of critically ill newborns brings unique complexities in communication between the care providers and families.
- 2.
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 the disease process, available therapies, known risks and outcomes, and personal values. The discussions are frequently complicated by strong parental emotions, stemming from altered expectations for their child’s future and the fear of loss.
- 3.
The stressful, emotionally charged nature of decision-making can sometimes lead to conflict and mistrust between families and providers and to disagreements about the best course of action.
- 4.
Sharing bad news is stressful for both the clinicians and the families and can hinder important goals-of-care discussions or even lead to avoidance of these conversations.
- 5.
A number of guidelines and recommendations exist to assist neonatologists and other care providers in the care of these patients. The importance of shared decision-making in this setting cannot be emphasized enough.
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.
What Clinicians Do
Numerous studies of neonatal providers have identified opportunities to improve communication and shared decision-making in practice. Surveys of neonatal clinicians and patients, as well as recording and videotaping of real and simulated encounters, have shed light on suboptimal communication practices and have laid a foundation for ongoing efforts to enhance this aspect of neonatal intensive care.
Practice Variation
Clinicians self-report wide practice variations in their approach to resuscitating critically ill infants, which may be attributable to variations in regional or national guidelines and cultures between institutions and sites of training. This nonuniformity may bias clinical decision-making by way of shaping which treatment options are offered to parents, , and it likely impacts the ultimate survival of these infants. Standardization of guidelines within and across institutions has been proposed as a way of ensuring a just approach to counseling ; however, debate remains regarding what level of standardization would be optimal or whether standardization would even be appropriate. , ,
Engaging Parents
Neonatologists also report divergent attitudes about whether to involve parents in decision-making and to what degree. , Likewise, in practice, they struggle to identify parents’ desired degree of decisional authority and to appropriately engage parents at this level. , In one survey, the majority of neonatologists identified providing information to expectant parents in antenatal consultation to be central to their role, but far fewer felt weighing the risks and benefits of the treatment options with parents was. Engaging in personal discussions about perceptions of death and quality of life or religious/spiritual views with parents is uncomfortable for clinicians in antenatal consultations and NICU settings and may be avoided in these contexts. , This may be related to insufficient attention to teaching these aspects of communication in subspecialty training. ,
Provision of Information
When providing parents with information, neonatal providers frequently discuss potential morbidity and mortality outcomes to guide decision-making. , Several studies have shown, however, that the information they provide is often inaccurate and more pessimistic than is warranted by the epidemiologic data. To combat the misinformation, the National Institute of Child Health and Human Development (NICHD) developed an online calculator in 2008, and the vast majority of neonatologists report reliance on this or similar tools for counseling. The accuracy of the outcome probabilities predicted by these tools is limited by both the data itself, which may reflect a prior epoch of therapeutic interventions, and the precision with which characteristics such as gestational age and fetal weight can be measured. Although parents desire individualized outcome information, clinicians often quote the statistical outcome data, , which may be difficult for parents with poor health literacy and numeracy to understand. Additionally, how clinicians present this information, including message framing or default options, may influence parents’ decisions. , Decision aids have been proposed as a strategy to impart outcome information to parents in a way that is clear and comprehensible. Although these strategies have demonstrated utility in increasing parental knowledge, it remains unclear whether this is helpful to parents’ decision-making. The outcomes clinicians report to parents are generally derived from research studies evaluating treatments and may not be meaningful to parents making these decisions. Instead, parents may consider statistical information to frame their expectations rather than to guide decisions. Additionally, when neonatal healthcare professionals discuss possible outcomes, they tend to focus on the medical outcome of the infant rather than the broader implications of the potential outcomes in relation to the family. ,
Values
Several studies have also suggested that clinicians’ approaches to shared decision-making may be influenced by their personal values. Neonatologists’ attitudes about death have been found to correlate with how they approach end-of-life decisions for their patients, and a study of pediatric ICU providers identified that their personal values impacted life-supportive treatment options that they offer and recommend to families. This is particularly concerning because providers’ views differ from those of parents. Neonatologists are more likely than parents to rate states of disability as worse than death and are less likely to save infants at all costs. , In the prenatal period, clinicians encourage pregnancy termination in situations of an anticipated nonsurvivable prognosis rather than approaching the decision neutrally, and many would choose termination themselves if facing a serious diagnosis. Clinicians are particularly pessimistic toward premature infants, choosing to forgo resuscitation of these patients more frequently than in older patients with similar prognoses. , This pessimism toward infants with poor prognoses likely begins in training. Although nearly all pediatrics residents in one survey felt it was a social responsibility to care for severely disabled children, more than two-thirds felt frustrated about providing care to infants with no hope of cure or independent functioning and questioned the care in these cases. Pediatrics residents, like attending physicians, overestimate disability and death in very premature infants, , are reluctant to initiate resuscitation for depressed premature infants, and express attitudes that the gestational age thresholds for resuscitation are too low. Although it is not realistic for clinicians to clear their minds of personal values and beliefs, recognition of the impact of values and differences in values on communication is paramount; clinicians should be mindful of their own visceral and emotional responses to charged clinical scenarios and cultivate a thoughtful and proactive approach to mitigating potential bias and imposition of values.
What Parents Want
In this section, the available evidence that informs communication in two commonly encountered, difficult clinical scenarios will be reviewed: antenatal counseling and end-of-life conversations. For each, dominant themes and goals are presented, with review of the evidence that supports their importance and of evidence-based approaches for the clinician.
Antenatal Counseling
To address some of the many pitfalls of counseling for infants with extreme prematurity, genetic conditions, or major anomalies, a number of studies have investigated parents’ attitudes toward antenatal consultation and needs for decision-making in this context. Kharrat et al. reported in a systematic review of parents’ communication needs in counseling for prematurity that parents report clear preferences for when and where they wish for consultation to occur, what information they want presented and in what manner, and how they wish to be involved in the decision-making. Although there are differences in the nature of consultation for prematurity compared with other conditions, many of the overarching themes identified are consistent with studies of parents who have undergone antenatal consultation for anomalies and genetic disorders.
Empathetic Communication
Receiving a diagnosis of a congenital anomaly, , genetic disorder, or threatened extreme premature delivery , is a stressful and traumatic event. Parents anticipating an uneventful pregnancy and healthy child are suddenly faced with a myriad of difficult decisions such as whether to continue or terminate the pregnancy, what (if any) fetal monitoring is appropriate, when to deliver the infant and by what route, and which resuscitative interventions to provide at delivery. Parents have made clear that although expectations for their child are changed by the diagnosis, their child’s personhood has not. Using the infant’s name in discussions, as well as focusing on their infant as a baby and not a diagnosis, is valuable to parents in this context. Likewise, listening, asking about the infant and family, answering parents’ questions, and acknowledging their emotions can help reduce parental anxiety and establish trust. , Specific behaviors including making visual contact, using gentle touch, and pacing the conversation to parents’ needs can also facilitate parent participation in these conversations.
Consultation Setting
Another aspect of empathetic communication is choosing the appropriate setting for the antenatal consultation. Although truly emergent deliveries impede counselors’ ability to control the timing and environment of the consultation, a quiet, private setting with adequate seating and space is preferable for these conversations. The timing of the conversation is also important to parents. For parents threatened with extreme prematurity, admission to the hospital may occur at any time of day or night, and maternal labor or medications may be distracting or interfere with cognition and comprehension. Finding a time when the mother is alert and attentive, the consultation not rushed, and there is time for parents to process information before delivery is challenging but appreciated by parents. , Delaying the consultation to allow support people to be present is also important to parents. These considerations must be balanced against the risk of imminent delivery—in some cases the window of opportunity to meet with the expectant parents before delivery is quite narrow.
For consultations for anomalies and genetic disorders, often in the outpatient setting, the timing is typically less urgent but still a significant consideration. Repeat visits for additional imaging and meetings with subspecialty consultants are often required. Meeting with subspecialists as a group in consultation so that all care-team members can participate in the same conversation reduces conflicting information and parents’ anxiety levels. Parents facing any of these diagnoses report benefit from multiple, repeated consultations, because this allows time for processing information and reflection on values. , , ,
Engaging Expectant Parents in Decision-Making
In consultations in which the anticipated prognosis of the infant is poor, parents typically wish to be involved in decisions regarding which therapies to provide at the time of delivery. , , , , What level of decisional authority individual parents desire and how much they wish to cede to clinicians in resuscitation decisions vary between parents. , Some parents feel that it is their parental responsibility to make the final decision independently, and others would prefer that the providers carry the burden of this difficult choice. Most parents, however, prefer a shared decision-making approach, with the clinicians providing relevant medical information that is pertinent to decision-making and with some degree of recommendation from the healthcare professional based on the medical information of the case and the values they have shared. Tailoring the antenatal consultation to meet parents’ needs is clearly desirable, but this requires the counselor to have the time to sit and identify what the parents need and to be knowledgeable and flexible enough to change the approach to the encounter on the spot. Haward et al. described a practice they dub “controlled improvisation” to support appropriately individualized consultation.
Providing Information
To participate meaningfully in consultation and decision-making, parents report that medical information provided by the medical team is essential. For diverse diagnoses warranting antenatal goals of care decision-making, parents desire information about the prognosis, specifically in regard to likelihood of survival and risks of long-term developmental impairment. , , , , This information should be presented clearly, in terms that are understandable to parents. Caution should be used in quoting numerical statistical information from large epidemiologic studies to parents, because they are not only difficult for parents to comprehend but also may not accurately reflect the prognosis of the particular infants’ situation. Consultation based on a monologue-style listing of potential poor outcomes with numeric estimates of their frequency (e.g., “your baby has a 72% chance of moderate or severe impairment consisting of cognitive motor scores 1 or 2 standard deviations below the mean, respectively, measured at 2 years of age”) may have the allure of seeming impartial and comprehensive but might not be helpful to expectant parents anticipating the birth of their baby, and it conflates population estimates with an individual’s chance of a particular outcome. Instead, presenting individualized information based on the unique characteristics of the infant and specific circumstances of the pregnancy and delivery is more helpful to parents. , , , For example, “in large groups of babies like Sophie, many surviving infants go on to have significant long-term problems with brain development. We can talk more about what that might mean for Sophie and your family if that would be helpful to you” broadly addresses the limitations of population-based outcome data for individual prognostication and invites parents to help the counselor understand their own values and/or to request more granular information if they feel it will be helpful to them. Although clinicians may perceive that prognostic predictions without exact numerical probabilities are less scientific and sophisticated, parents are less inclined to make decisions based on survival estimates than their own values.
In situations of poor prognosis, parents wish to be informed of the risks of morbidity and mortality, even when this information is emotionally distressing , ; however, parents find this information more helpful in preparing to participate in their infant’s care than in making decisions to provide or withhold supportive therapies. , Excessively pessimistic framings of survival and impairment information, even when prognosis is poor, dashes parents’ hope and is unhelpful both in parents’ coping and in fostering trust and rapport in the care team. , When prognosis is uncertain, parents wish for this to be honestly discussed. Both over- and understatement of certainty can have serious consequences. Having an infant survive after being told excessively negative prognostic information was reported by parents as irrevocably damaging to their trust in their care team. However, using the guise of uncertainty to avoid sharing bad news leaves parents without adequate information for decision-making.
In addition to prognosis, parents want information during antenatal consultation that focuses on the anticipated medical course, potential treatments and interventions, and how they can take an active role in their infant’s care after delivery. , , , Many parents are unfamiliar with the NICU environment; helping them form expectations of what their child’s life will be like and what technology they are anticipated to need are helpful in mitigating anxiety. Tours of the NICU and delivery area are also often helpful to parents, and resource/veteran parents offering peer-to-peer support may also be valuable. ,
Values
Parents’ values are critically important in how they consider major decisions about their infants, perhaps more so than prediction of survival. Unlike the quantitative way clinicians historically have approached these decisions, parents approach these situations based on emotions rather than rationality. , Hope and spirituality were overarching themes in multiple studies of parents facing extreme prematurity, , , , and considerations around religion and faith influence parents’ decision-making. , Even when the chance of survival is slim, giving their child a “fighting chance” and not squandering an opportunity for survival is important to many parents. , , Parents also tend to view neurodevelopmental impairment differently than clinicians do; in a large, longitudinal study, parents of surviving extremely premature infants rated their quality of life better than their physicians did.
Parents facing diagnoses of genetic disorders and severe congenital anomalies report similar values in their decision-making. Parents of surviving children with trisomy 13 and 18 perceive that their children are happy and enrich their families. These parents do consider issues of suffering and quality of life in making decisions about interventions to provide at delivery. Their expectations are not unrealistically focused on intact survival but rather on achievable goals such as having the ability to meet their child, bring their child home, and give their child a happy life. Even when medical providers predict a lethal diagnosis, some parents choose to continue the pregnancy and do so based on their beliefs, values, and experiences. , Parents have described wanting their child to be treated as a person and discussed by name, and they express hopes like wanting to meet their child alive. ,
End-of-Life Conversations
After a critically ill infant is delivered and is in the NICU, parents and clinicians may again be faced with decision-making around goals of care. These decisions, like resuscitation decisions in the antenatal period, are emotionally challenging. There are many opportunities for improvement in communication between healthcare professionals and parents in this context, and a number of studies of parents have revealed how clinicians can better support decision-making. , , , , ,
As is the case for antenatal consultations, conversations to discuss redirection of care goals for critically ill infants are quite sensitive. An empathetic approach is essential to supporting parents, including thoughtful consideration of the language, information, timing, and environment of the communication. Parents have detailed recollection of how bad news was delivered even years later, and their perceptions of the situation affect their long-term well-being. , ,
A private, quiet setting is helpful in conversations around end-of-life decisions for infants, ideally away from the infant’s bedside, allowing parents to listen without distractions. , Likewise, the number of people present should be carefully considered. Although it may be advantageous for parents to be able to speak with different subspecialists involved in the infant’s care simultaneously, these conversations can be overwhelmed with excessive medical staff and trainees. Obtaining pertinent information and recommendations from care-team members who are not essential to the meeting can be done by the primary team in anticipation of these discussions. Parents clearly value a nursing presence in these meetings, especially nurses with preexisting relationships with the family. , , , , Timing of decision-making conversations for dying infants is also important, because time pressure has the potential to impact the decisions that are made. Parents who are rushed with urgent decisions often opt for prolonging life. Importantly, time to process and come to terms with the situation at each stage impacts parents’ coping.
Empathetic Language and Trust
Empathetic language and behaviors by medical team members are important to parents in conversations about and provision of end-of-life care. Numerous studies of parents with infants in a NICU have found that there are opportunities to improve communication, regardless of the infant’s diagnosis and prognosis. When an infant is critically ill or dying, however, communication challenges are particularly problematic. Parents of dying infants report that avoidance or abandonment by staff, , , along with perceived stalling and avoidance of giving bad news that ultimately delay disclosure, are upsetting. Likewise, behaviors like speaking abruptly, seeming cold and insensitive to the family’s situation, and laughing or joking outside the dying child’s room are detrimental to parental coping. When care providers dismiss parents’ observations and concerns, parents question the honesty of the providers. Mistrust in clinicians leads parents to doubt the truthfulness of medical information provided, including the prognosis, , which creates conflict in decision-making. , Distrust in the medical facts can in turn lead to distrust in the care team’s recommendation for redirection of care and may contribute to decision regret, even when parents to accede to recommendations to withhold or withdraw life-prolonging interventions.
Clinician behaviors that parents report foster trust in the medical team include discussing information in an unrushed, compassionate, and sensitive manner. Clinicians should be thoughtful not only of specific language used in discussions but also of tone of voice and body language. Acknowledging the difficulty of the situation and addressing parents with humility and understanding also facilitates communication. , , , Sensitivity to the power differential between clinicians and patients as well as racial, language, and cultural barriers is also paramount. , , ,
Decisional Authority
Parents of critically ill infants in the NICU wish to be involved in decisions about their child’s care, particularly for decisions that are high-stakes and values-based. Numerous studies of parents have shown that parents desire some degree of participation in decisions about end-of-life care, but preferences range from receiving information and having little to no decisional responsibility to complete control. , , , , , , , , , , Most parents in NICU studies endorse a shared approach to these decisions, which is consistent with evidence from parents facing similar decisions in the pediatric ICU , , and pediatric oncology. , Engaging parents in end-of-life decisions for their infant in a way that aligns with their desired level of decisional authority is important to their long-term well-being, because their perception of their role in the decision impacts grief and coping. , , Parents, much more so than clinicians, have to live with the emotional consequences of these decisions. When parents of infants who die in the NICU feel that physicians made the decision to discontinue supportive therapies alone, they experience more grief than those who felt the decision was shared; those who believe they have borne the burden of the decision alone experience the most grief. Parents who are given information without recommendation or guidance by their care team also experience more feelings of anxiety and abandonment on later reflection.
Information
For parents to be involved in goals-of-care decisions, particularly about the end of life, medical information regarding the condition, prognosis, and possible treatments for their infant is necessary ; however, this information alone is not sufficient to support their needs. Clinicians need to also discuss the broader implications of these decisions and what this could mean for the child and the family in the short- and long-term. Parents vary in the quantity of information they desire in these conversations but benefit most when they perceive it is personalized and complete but not excessive. , , Parents appreciate clarity in communication of factual medical information, including avoidance of jargon or overly technical terms and avoidance of ambiguity. , , Divergent opinions from different members of the care team should be limited, because this can be confusing and distressing to parents. , , , , In discussions of prognosis specifically, parents report wanting to hear clear, objective evidence when the anticipated outcome is poor with certainty. When prognosis is uncertain, however, honest, factual discussion of the medical information and disclosure of the uncertainty is valued. , , , , , Withholding information, as well as presenting unfounded, overly optimistic or pessimistic survival predictions, has the potential to undermine trust in the clinician if parents feel they are being manipulated. , ,
Values
As in antenatal resuscitation decisions, parents may have values in making decisions about end-of-life care for their child that differ from those held by their providers. These values appear to be ethnoculturally derived and based on personal philosophic principles more than past experiences. , For parents, concerns about suffering and quality of life , , , are tempered against hope , , and the desire for more time with their child. , , , Many parents choose to pursue all therapies that preserve an opportunity for survival, because they perceive that giving up a chance at life would be unacceptable , ; parents have expressed that the knowledge that “everything” was tried was comforting to them in their bereavement. Memory-making , , , , and cultural/religious practices are important to parents when death is inevitable, , , and it is likely that NICU parents, like parents of older children in the ICU, consider “being a good parent” as influential in their decision-making. Physical proximity to the dying child has been noted in ICU studies of older children to be important as well. ,
Despite this emphasis on eliciting, understanding, and taking into account parents’ values in end-of-life decision-making, doing so is challenging. Parents may struggle to identify, understand, and articulate their own values. Even if they find their values unclear, parents rarely regret the decisions made when they feel they were adequately involved in the decision process, , , although some report regrets about how their time was spent while their child was living. In some studies, however, a proportion of parents felt that their expectations were not met or their wishes were not respected. ,
Recommendations for Practice
Parents have repeatedly indicated that communication with the medical team colors their perceptions of this extraordinarily difficult situation. Although neonatal healthcare providers who occupy this professional space may hone their communication skills and become adept at supporting parents in high-stakes decisions before and after birth of the infant, the detachment necessary to engage in these encounters routinely has the potential to widen the divide between clinicians and parents, who are the least oriented to the process but the most affected by it.
- 1.
Individualize information to meet parents’ needs: Possession of all the relevant facts is an essential component of informed consent and supports parental authority in these decisions. Facts that are not understood are unhelpful to meaningful informed consent. The clinician should anticipate being in possession of wider and deeper knowledge that will necessarily be shared; the quality of communication need not be measured by the volume of information transferred from the clinician to the parent. Neonatal healthcare professionals should use available tools to elicit informational needs and share information in a contextually appropriate way ( Figs. 89.3 and 89.4 ).
Fig. 89.3
Suggested Template for Parent-Centered Antenatal Consultation Form, Part 1 .
(Adapted from Haward MF, Gaucher N, Payot A, Robson K, Janvier, A. Personalized decision making: practical recommendations for antenatal counseling for fragile neonates. Clin Perinatol. 2017;44:429–445, Fig. 1, p. 435.)
Fig. 89.4
Suggested Template for Parent-Centered Antenatal Consultation Form, Part 2 .
(Adapted from Haward MF, Gaucher N, Payot A, Robson K, Janvier A. Personalized decision making: practical recommendations for antenatal counseling for fragile neonates. Clin Perinatol. 2017;44:429–445, Fig. 2, p. 440.)
- 2.
Involve and empower families: As the natural surrogate decision-makers for children, who inherently exist in their family’s shared culture and values, parents have a fundamental authority to act in their children’s well-being and should be engaged in decision-making in the role of parents (rather than ad hoc medical providers); life-and-death decisions parents make before and after birth are parenting decisions. Parents should be encouraged to ask questions about their child’s condition, medical support needs, and how they can be involved in daily care. For parents who may be overwhelmed and unsure what questions to ask, clinicians may suggest example questions that parents commonly want to know ( Table 89.1 ).
Table 89.1
Types and Examples of Common Parent Questions
Types of Questions Parents May Have
Examples of Parent Questions
Communication with medical care team
Should I join daily rounds? Can I join virtually or by phone? How can I be involved in the care plan decisions?
Getting updates about their child’s condition
What are the roles of clinicians on my care team? How do I reach them to get information about my baby when I cannot attend rounds?
Use of a pulse oximeter and other bedside monitoring devices
Can someone teach me about what this device is measuring? What level on the monitor means my baby has a safe level of oxygen?
Changes in clinical condition
How will I know if my baby is getting sicker? What are signs that I should be worried?
Feeding devices such as a nasogastric tube
How long will my baby be expected to need this device? Can someone start teaching me about how I can work on feeding skills with my baby?
Decision-making in “gray” areas
How will I know when there is a decision to be made and what the treatment options are? Can someone help me understand the risks and benefits of each option?
Long-term outcomes
What types of outcomes are possible for a child with medical conditions like mine has? What outcomes are most likely?
Preparing for life after discharge
Can someone start teaching me about anticipated after-discharge needs? Can I get information about things I can do to promote my baby’s development?
Tracheostomy or other long-term supportive technology
How long is my child expected to have this type of support? What will life be like at home with this these care needs? How have other families adjusted to the changes of having a child receiving this kind of support? Can someone start teaching me how to care for my child with these devices?
- 3.
Base decisions on parents’ values: Elicitation of parental values is the lynchpin of shared decision-making for infants. Parents’ values are not uniform but often diverge from medical providers, whose experience of critical neonatal illness differs greatly from their own. Parents’ values are not inherently illogical, and parents who base decisions on values rarely regret their choices ( Fig. 89.5 ).
Fig. 89.5
(A) Clinicians may perceive a high likelihood of nonsurvival paired with a high chance of moderate to severe impairment among survivors as dismal, with only a very low chance of the “desired” outcome of intact survival. Given the statistical probabilities, the burdens of infant suffering and societal cost may appear to outweigh the benefit of therapy, and comfort care is logically recommended. (B) Parents may view these outcomes differently. If any survival, even with impairment, is seen as a desirable outcome, the probability of a “good” outcome increases. If having a surviving very impaired child is considered the most undesirable outcome, the risk of this is low, because many of the sickest infants die. Finally, if dying after intensive care is perceived as favorable compared with possibly missing an opportunity to have an intact survivor, the risk of the unfavorable outcome falls to zero if an attempt at resuscitation is made.
(Adapted from Kukora SK, Boss RD. Values-based shared decision-making in the antenatal period. Semin Fetal Neonatal Med. 2017. doi:10.1016/j.siny.2017.09.003. Fig. 4, p. 22.)
- 4.
Foster trust through empathy: Although step-by-step instructions for good communication are limited in their ability to foster authentic empathy, neonatologists who have experienced the NICU from a parent’s perspective recommend strategies for supporting parents in these situations ( Table 89.2 ).
Table 89.2
Recommendations to Clinicians
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NICU care providers need to be cognizant of parents’ emotional needs, which can have both negative and positive impacts after discharge. Such experiences can manifest with sleep disorders, dysfunction at work, periodic anxiety, and even reactive depression.
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Neonatal care is not an exact science. Care providers must remain humble. Avoid framing parents’ decisions and actions negatively, such as: “Parents don’t understand” or “If I were in their situation, I would not…” Too often, it is providers, not parents, who do not have a panoramic view.
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Update parents on all possible risks, but also give a positive outlook by recalling success stories.
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Remind parents that the infant’s illness was not caused by something that they did. Recall that clinicians rarely know the etiopathogenesis of most neonatal disorders.
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Remind parents that the child is so fortunate in having parents who care. Help them to prioritize their energy and well-being, get enough rest and sleep, continue to attend to their other children, and recognize what they can and cannot control. Encourage them to let go where they can.
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Remind parents that life will change after the infant recovers from the current clinical instability, and once she/he is discharged from the NICU, they will be able to hold her/him with all the parental affection and care. It will get better.
NICU , Neonatal intensive care unit.
Summarized from Janvier et al., 177.
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- 5.
Balance developing the ownership and individual skill needed to support parents through high-stakes decision-making with the need to provide families with what they need in the moment: Consider consultation with perinatal hospice/pediatric palliative care if the parents’ needs exceed the team’s abilities to provide coordinated and comprehensive end-of-life care or complex decision-making.
Communication Education
Although the literature suggests approaches to engaging parents in serious communication in antenatal counseling and neonatal end-of-life care, written recommendations are difficult to translate into clinical practice. Only a few of the suggested interventions are specific and modifiable. Some require additional mindfulness on the part of the clinician, such as choosing an appropriate environment for the communication; others require attention to changes to behaviors that may not be conscious or natural, such as body language and eye contact. Much of the guidance for these conversations, however, is vague. Instructing clinicians to be sensitive and empathetic or to elicit parents’ values and desired level of decisional authority is unhelpful without telling them how to do so. Although some of the approaches recommend specific language or phrasing to initiate shared decision making or tools to support and facilitate communication, , the skills to partake in these discussions effectively cannot be learned from reading alone.
Approaches to teaching clinician trainees how to deliver serious, life-altering news have been well studied, but there is no consensus on the most effective way to impart these skills. Clinicians in a variety of specialties find these emotional conversations stressful and feel that they have been inadequately trained to engage in them. Anxiety about their patients’ and their own emotional reactions may lead providers toward emotional avoidance rather than empathy and engagement. Unfortunately, time in practice and experience with bad-news conversations does not improve distress in these clinical contexts.
To address this need, educators have developed a number of in-person communication trainings focused on task-specific practices to address bad-news encounters, particularly for medical trainees. The specific content and structure of these educational interventions are variable, but the experiential nature of active learning approaches appear more beneficial in imparting these skills compared with didactic teaching or written materials alone. For these programs to be effective, they necessitate that sessions be at least several hours long to allow sufficient participation opportunity, and they are ideally repeated over time. While approaches featuring intensive communication practice and simulated patient scenarios reinforce this essential experiential learning, they are often resource intensive and their effects are difficult to evaluate.
Fellows graduating from neonatal-perinatal training programs report that although they have received extensive education on medical management of critically ill neonates, they do not feel adequately trained to engage in complex communication with parents. Conversations about end-of-life care and values such as religion and spirituality were among the most uncomfortable for fellows, and the majority perceive that they prioritize communication education in these situations over their supervising faculty. Likewise, communication training in antenatal counseling is not universal in fellowship training programs, with the majority of programs lacking formalized curricula. Although program directors acknowledge the importance of perinatal decision-making in clinical practice, many report their graduating fellows are not adequately trained or only somewhat competent in this domain. When fellows are evaluated for antenatal counseling proficiency, neonatology training programs often focus on the information delivery as the goal, rather than the experience of parents. Perceptions of fellows’ performance by the actor parents in simulations do not align with assessments of faculty, because they report feeling overwhelmed and bullied with the excessive information.
Despite the need for training programs focusing on the specific communication challenges of neonatal care provision, very few have been reported in the literature. The Neonatal Critical Care Communication (NC3) training reported by Boss et al. is a 3-day intensive communication skills module for fellows and nurse practitioners. In this session, participants were given didactic overviews of evidence-based frameworks for complex conversations in the NICU, then engaged in small-group role-playing sessions with actors playing family members. The cases used for role-playing focused on common NICU situations that fostered participants’ interaction longitudinally in three stages of conversation: disclosing bad news, negotiating care goals, and end-of-life discussion. The fellows and practitioners were given feedback during these interactions and were subsequently encouraged to informally practice additional challenging scenarios they had encountered. The training was rated favorably by participants on surveys following the program, and all reported increased confidence in their skills.
The Relational Learning approach described by Meyer et al. involved more diverse interprofessional providers participating in 6-hour workshops. The workshops began with collaborative exercises, an educational film, and a brief didactic presentation highlighting the challenges of communication in the NICU context. Participants then engaged in role-playing cases with professional actors portraying family members, with subsequent reflection and feedback. The session concluded with group discussion, sharing the practical applications learned in the role plays and the potential application to practice. This training was also rated highly by participants on a posttraining and follow-up survey, with the majority reporting improvement in at least one category on self-appraisal.
Virtual standardized patient training has also been proposed as a method for teaching communication skills in antenatal counseling. Motz et al. demonstrated utility and feasibility in using a simulator programmed to display emotions through facial expressions and body language to assess participants’ skills in identifying emotions and selecting empathetic responses. Whether these virtual simulator-based trainings translate to improvements in clinical behaviors is yet to be determined.
Approaches to communication education using techniques from improvisational theater, or “medical improv,” have also been piloted in the neonatal setting. Improv exercises from improvisational theater are being increasingly integrated to build communication in a variety of professional education settings, including medical training. These exercises emphasize skills that are foundational to serious conversations, including listening, adaptability, fluidity of thought, cooperation, empathy, and spontaneity. Stokes et al. noted that neonatology fellows and attending physicians participating in a 3-hour workshop targeting skills necessary in antenatal counseling identified thoughtful insights about their behaviors in these conversations that could be applied to clinical practice. Likewise, Sawyer et al. reported results from a 90-minute workshop for neonatologists and fellows focusing on verbal and non-verbal behaviors affecting interpersonal communication. The authors compare the prevailing educational model for antenatal counseling to emerging models, including medical improvisation, noting that newer approaches may better teach learners to express empathy in challenging conversations. Participants in a postworkshop questionnaire and follow-up survey indicated on self-reflection measures that the workshop had improved the quality of their antenatal counseling, ability to connect emotionally with parents, listening and observation skills, flexibility, bedside manner, and empathy.
While these experiential, neonatology-specific communication trainings are promising, they have been piloted on small sample sizes and have relied largely on self-reported subjective measures of performance. Participants in these interventions were usually self-selected, creating considerable potential for bias because clinicians desiring to enhance these communication skills may be more willing to attend, participate meaningfully, and evaluate these programs highly. Further research exploring these training methodologies with diverse interprofessional neonatology providers and measuring the impact on behaviors in practice and families’ experiences is warranted.
Conclusion
How best to engage in clear, effective, and compassionate serious conversation in NICU settings is informed by an abundance of empirical work, both specific to the NICU context and more broadly. The importance of research on what healthcare professionals do, what parents experience and want, and how best to develop and teach communication skills cannot be overstated. Although ethical paradigms can and have shifted, requiring adjustment in individual providers’ attitudes and approaches over years of practice, these shifts are in large part attributable to rigorous empirical study. Some aspects of good communication, such as adequate time, space, and infrastructural resources, must be provided by institutions, and clinicians should work within their organization to foster a culture of expectation and insistence on these resources. Other aspects such as empathy, kindness, and interpersonal skill must be cultivated over a lifetime, beginning much earlier than medical/professional school or postgraduate training, but all neonatal providers have an obligation to be mindful of these essential aspects of care.
REFERENCES
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