Decision Making at Extreme Prematurity: Innovation in Clinician Education

Abstract

Decision-making at extreme prematurity remains ethically and practically challenging and can result in parental and clinician distress. It is vital that clinicians learn the necessary skills integral to counseling and decision-making with families in these situations. A pedagogical approach to teaching counseling should incorporate adult learning theory, emphasize multidisciplinary team in-situ simulation that links to counseling clinicians’ daily practice, and includes critical reflection, debriefing, and program assessment. Multiple educational strategies that train clinicians in advanced communication and decision-making offer promising results to optimize antenatal counseling and shared decision-making for families facing possible delivery at extreme prematurity. Continued process evaluation and innovation in these educational domains are needed while also assessing the effect on patient-centered outcomes.

Introduction

Decision-making at extreme prematurity remains ethically and practically challenging and can result in both parental and clinician distress.¹ When delivery is anticipated, clinicians in obstetrics, maternal-fetal medicine, and neonatology must counsel families amidst prognostic uncertainty in rapidly evolving and emotional situations. Clinicians must establish trust with a family they may have never met, elicit family preferences and values, and deliver complex medical information in a way a family can understand in order to arrive at an informed, shared decision that aligns with their goals. Sometimes a decision is needed urgently, sometimes there is time to process potential options, and sometimes parents are not offered a decision at all as the decision has been made without them. The complexity of decision-making at extreme prematurity stems from the existence of multiple ethically permissible options, wide ranges of possible infant outcomes, significant uncertainty in prognosis, and institutional variation in practices². The dilemma of whether to provide or withhold life-sustaining treatment is among the most emotionally complex and morally stressful decisions in perinatology.

Currently, there is significant variation in counseling practices across institutions and a deficiency in education for counseling clinicians.^2,3 Physicians tend to emphasize cognitive information and statistics when counseling and often fail to elicit or address parental values or fully explain management options, including comfort care.^4–6 In addition, values that pregnant persons find most important during decision making for delivery room resuscitation for high-risk newborns include religious faith, spirituality, hope, and a personal connection to their physician. Yet, these preferences often differ from what physicians identify as most important, resulting in a barrier to effective communication.^4,6,7 Given these findings, clinicians must learn the skills integral to collaborating with families during decision-making.

What Makes Good Counseling and Shared Decision Making?

Specific skills and ethical approaches are required for effective counseling and decision-making at extreme prematurity. Clinicians performing antenatal counseling must engage with families in conversation to determine their preferred level of involvement, illuminate their values and clarify the amount and type of support needed, in order to participate in a shared decision. Navigating the emotionality of the situation, acknowledging the uncertainty, and identifying and offsetting the power differential between a physician and a patient/family are all components required to support shared decision-making.^8,9 Perinatologists and neonatologists who demonstrate compassion and convey warmth are more likely to create a trusting environment to share such crucial yet sensitive information and ultimately result in optimal decision making.⁸

Recently, there has been a shift in the focus of counseling clinicians from providing information to parents to empower them to make an informed decision to helping parents clarify their own values through careful listening, questioning, and communicating.¹⁰ Families emphasize the importance of physicians helping them articulate these goals and values, including understanding the role their religious and spiritual beliefs may have in making decisions for their infant.⁴ Individualizing the antenatal consult to the specific needs and preferences of the family is paramount to the success of a good counseling session¹¹, as parents may differ in the amount and type of information desired and their preferred role and involvement in the decisional responsibility.¹² While these decision-making preferences vary significantly among parents, physicians are typically poor at identifying which decision-making style parents prefer.^13,14 As such, clinicians need to develop advanced communication skills that help families clarify their own values and decision-making preferences.

Bias and Message Framing May Influence Counseling and Decision-Making

The process of counseling and subsequent decision-making is often dependent on the information transferred from physicians to parents. Differences in clinicians’ values, life experiences, religious and/or political views, and region of practice are inherently tied to their counseling approach and recommendations and may reflect implicit biases.^15,16 Such unconscious biases may be based on a patient’s race, education, insurance status, or age and may impact counseling approaches.^17,18 Message framing in the context of perinatal counseling in which mortality versus survival percentages are presented may reflect biases of the medical provider and influence parental decision-making.¹⁹ There also may be important differences in the perspectives and values of pregnant persons of different races and ethnicities facing the threat of extremely premature delivery.²⁰ Given potentially divergent counseling practices and patient/family preferences, educational programs surrounding periviable decision-making should emphasize cultural competence and humility, bias mitigation techniques, and individualized shared decision-making for optimal counseling.

The Prevailing Educational Paradigm is Inadequate

Despite the challenges inherent in counseling and decision-making at extreme prematurity and the need for effective and empathetic communication from physicians, there is little formal training for clinicians in this domain. Training is not routinely integrated into curricula, assessment is seldom conducted, let alone reported, and a consistent ethical framework is lacking.²¹ Neonatologists and obstetricians alike are not commonly trained in how to best guide decision-making jointly and collaborate with parents in highly stressful and emotional situations.² Furthermore, the art of helping families articulate and construct their personal values and preferences is rarely taught.²²

Teaching communication and counseling skills, such as empathy, active listening, and shared decision-making, however, is challenging in practice. In medical school, students are taught mainly to adhere to a script, followed by practice on standardized patients, but they are seldom prepared for the microethics of everyday conversation and consultation.²³ They are exposed to the hidden curriculum of day-to-day practice during clinical rotations and the current culture of medicine that emphasizes perfection, outcome over process, and hierarchy resulting in dehumanization and decline in empathy.^24,25 During neonatal and obstetric fellowships, many trainees learn skills in prenatal counseling through observation of attending physicians and then ultimately by conducting the sessions themselves, learning through trial and error, often unobserved and without the opportunity for feedback. While there is some value in the experiential learning in this approach, this unstructured training does not ensure the moral instruction needed to counteract the effects of the hidden curriculum²⁴ nor does it incorporate the supervision and feedback that are essential to improving trainee skills.⁸ These experiences should be supplemented with formal targeted training programs to enhance communication skills in order to lead to documented improvements in the sense of preparation, communication, and relational skills, and confidence^26,27, as well as parent-reported outcomes, such as satisfaction, knowledge, and perceptions.

Educational Theory and Pedagogy

A pedagogical approach to teaching counseling should incorporate adult learning theory, based on the principles of self-directive and experiential learning, although the best methods for this type of training have yet to be identified.^28,29 A variety of educational strategies may be incorporated into a program to teach clinicians how to engage in ethical decision-making while counseling at extreme prematurity, described in Table 1. The main conceptual framework used for experiential learning is Kolb’s experiential learning cycle. Effective learning occurs when a person progresses through a cycle of four stages: 1) concrete experience, 2) observation and reflection on that experience, 3) assimilation of these reflections into abstract conceptualization, followed by 4) active experimentation.^28–30 Kolb’s learning cycle is the main conceptual framework used for experiential learning in simulation programs.³⁰ Importantly, to allow for the active experimentation phase, learners must have the opportunity to return to the scenario after debriefing to trial what they have learned.³⁰

Table 1.

Educational frameworks relevant to perinatal counseling education.^{21,25,29,30,32,35}

Educational Framework	Educational Method	Application to Perinatal Counseling Education
Kolb’s Experiential Learning Cycle	Knowledge created through transformation of experience	Simulation/Role Play/Virtual reality simulators: Simulated event + Debriefing
Schon’s “reflection-in-action” and “reflection-on-action”	Critical reflection to challenge conceptual framework and principles	Debriefing Bias training
Relational Learning	Learning and development of professional competence through human connection	Interdisciplinary workshop with simulated emotionally challenging scenarios
Epstein and Hundert	Professional competence assessment	Development of program goals and outcome measures
Kirkpatrick	Effectiveness assessment	Assessment for observable change in communication skills of providers

Building on the reflective stage in Kolb’s cycle, Schon’s theory of reflection-in-action involves questioning one’s own conceptual framework to understand how personal beliefs, attitudes, and values may be impacting one’s practice.³⁰ Such critical reflection may be utilized in the form of debriefing a simulated or real-life clinical encounter in order to challenge existing frameworks, biases, and principles.

One educational approach within the experiential learning framework that incorporates ethical principles and the interdisciplinary learning environment has been called relational learning. Relational learning has been described as learning in the context of how healthcare professionals interact with each other and patients/families and the professional development that occurs through the connection to the ethical and social norms of such relationships.^24,25 A relational learning model has demonstrated that effective learning generates not only from direct participation in conversations but also from the opportunity to observe others and collaborate in experiential learning with interdisciplinary colleagues.^24,26,31

Identifying and tracking competencies, including knowledge and performance, is vital for lifelong learning and improvement for both trainees and faculty. To assess professional competence, Epstein and Hundert’s framework for supporting and assessing professional competence emphasizes communicative competence, patient-physician relationships, integration of knowledge and skills, and self-reflection, building on current assessment formats for physicians that solely test core knowledge and skills.³² This approach to clinical competence has been increasingly recognized by professional bodies such as the Accreditation Council for Graduate Medical Education^32,33 and has been applied to competency in relational learning programs.²⁴ As applied to antenatal counseling at extreme prematurity and adapted from milestones relevant to ethics and professionalism from the ACGME, Table 2 describes ethical and relational skills needed for competency in such conversations that should be emphasized in the pedagogical design and assessment tools of any program.^24,34

Table 2.

Ethical proficiencies mapped to ACGME milestones relevant to any educational program.^24,33,34

Ethical Proficiency	Relevant ACGME Competencies/ Milestones
Establishment of trust	Trustworthiness that makes colleagues feel secure when one is responsible for the care of patients (PROF2) Has open communication facilitating trust in the patient-physician interaction (SBP2)
Ability to engage in shared decision making and sharing of the moral burden of decision-making	Develops goals and makes decisions jointly with the patient/family (SBP2) Remains flexible and committed to engagement with patient/family throughout with patient’s illness (PROF4)
Capacity for empathy and compassion	Has excellent emotional intelligence about human behavior (PROF1)
Acknowledgment and tolerance of uncertainty and vulnerability	Transparent expression of uncertainty and limits of knowledge (PROF2) The capacity to accept that ambiguity is part of clinical medicine and to recognize the need for and to utilize appropriate resources in dealing with uncertainty (PROF4)
Maintenance of professional integrity	Recognizes that he or she is a role model in all actions and behaviors at all times (PC4) Serves as a role model for others in interdisciplinary work and is an excellent team leader (SBP4) Others look to this person as a model of professional conduct (PROF1)
Capacity for reflective self-awareness and bias recognition	Has insight into one’s own assumptions and values that allow one to filter them out and focus on the patient/family values in a bidirectional conversation (PC3) Routinely reflects both in action and on action (PC4) Has excellent insight into self, and uses this information to promote and engage in professional behavior as well as to prevent lapses in others and self (PROF1)
Sense of self-efficacy to engage in challenging conversations	Is sought out as a role model for difficult conversations and mediator of disagreement (ICS1)

ICS= interpersonal and communication skills; PC= patient care; PROF= professionalism; SBP= systems-based practice.

Assessing the effectiveness of any educational intervention is paramount to ensuring observable change in participants and measuring impact. Kirkpatrick’s model is one of the most utilized methods of evaluation that consists of four levels of assessment: 1) Reaction (what was the learner’s response to the training?), 2) Learning (what did they learn as a result of the curriculum?), 3) Behavior (what is changing about the learner’s behavior as a result of this training?) and 4) Results (how is this curriculum impacting the learners, patients and/or institutions on a broader scale?).³⁵ When looking at the effectiveness of communication skills training, many studies primarily explore levels 1 and 2; however, levels 3 and 4 remain paramount to identify an observable change in clinicians’ behavior in their daily practice.

Incorporating these frameworks provides a starting point for a curriculum or educational program for counseling at extreme prematurity. Such a program should emphasize multidisciplinary team in-situ simulation that is linked to the daily practice of counseling providers, with built-in critical reflection, debriefing, and program assessment. All together, this will provide a valuable and effective learning experience in addressing the ethical challenges in decision-making at extreme prematurity.

Current Educational Models and Innovation

While multiple methods of communication training for medical trainees have been described in the literature, the category is broad, and the evidence remains limited in effectiveness and endpoints.²¹ Studies have shown these skills can be taught effectively, although little has been published in neonatology, and even fewer explicitly focusing on clinician education surrounding decision-making at extreme prematurity. Current educational methods that involve communication and decision-making training that may apply to counseling providers are described here and summarized in Table 3. The optimal approach to teaching such skills will likely vary based on learner preferences and facility resources. Continued research into the efficacy of different models is necessary.

Table 3.

Current innovative educational methods for communication training

Source	Educational Strategy	Targeted Group	Topic	Conclusions/Findings	Innovation
Lee et al. 201536	1-Hour Online module	3rd-year medical students	Cultural competency + communication strategies	Module improved cross-cultural communication skills	Module paired with clinically oriented assignment and evaluation
Boss et al. 201339	3-day retreat with didactic session and role play	Neonatal Fellows and Nurse Practitioners (NPs)	Neonatal Critical Care Communication (NC3)	Increased clinicians’ self-perceived competence in communication	Fellow-nurse practitioner collaboration
Meyer et al. 201126	6-hour workshops	Physicians, Nurses, Social Workers, Psychologists, Chaplains, and Medical Interpreters	Program to Enhance Relational Communication (PERCS)	Improvements in self-perceived competence and preparation for difficult conversations	Multidisciplinary involvement, relational learning framework
Parham et al. 201940	7 independent workshops with module pre-work	Neonatal fellows	Critical care communication	Increased fellows’ self-perceived preparedness in selected core competencies in communication	Family members as faculty and educators
Boss et al. 201241	Single simulation with debriefing	Attending physicians and fellows	Decision-making during a prenatal consult	Simulation reproduced the decisional context of prenatal counseling	Use of simulation to study decision-making at extreme prematurity
Bowen et al. 202027	4.5-hour simulation-based workshop	NPs	Difficult conversations	Increase in use of communication skills and perceived empathy scores	Randomized trial, targeted towards NPs
Motz et al. 201848	Virtual standardized patient simulator	Neonatal physicians and NPs	Emotional recognition and empathy	High level of emotion recognition in virtual simulator	Simulated prenatal consultations using virtual standardized patients
Kukora et al. 202051	3-hour workshop	Medical students, pediatric subspecialty fellows, NPs, and attendings	Bad news disclosure	Enhanced self-efficacy in bad news communication	Improv-based exercise

Online Modules

Online modules provide interactive content with the benefit of flexibility, allowing for asynchronous learning, lower long-term cost, and potential for broad dissemination. Online modules allow for the virtual delivery of high-quality educational content to a large audience, even nationally or globally, and bridge the gap for institutions that lack the time and/or resources to achieve a high-quality curriculum. Online modules that are interactive and incorporate learner participation and skills evaluations have been shown to be effective in changing clinician behavior.³⁶ Finally, online learning can be enhanced with in-person education, when feasible, through a subsequent facilitated session in a “flipped classroom” approach, in order to amplify the online experience and solidify skills. At this time, there is only one specific online module dedicated to teaching clinicians skills in counseling at prematurity, while others addressing advanced communication skills are limited by the lack of interdisciplinary approach.³⁷

Role Play and Simulation

Simulation is a well-recognized method for experiential learning and has been shown to reliably elicit authentic physician behaviors.³⁸ Simulation may also minimize the burden to vulnerable groups of patients, which may be particularly useful for trainees or inexperienced learners. A robust body of research confirms that role-play and simulation improve clinician confidence and preparation to engage in complex conversations with patients and families, both immediately and over time.^26,27,39 Successful communication skills simulation training and role-plays allow trainees to safely practice a range of communication skills with real-time feedback from “parents” (who may be standardized patients, actors, or trained volunteers) and from faculty. Training specific to the NICU that simulates counseling by individual clinicians and by interdisciplinary neonatal teams has been successful in demonstrating improvements in self-efficacy.^26,39 Another novel approach uses trained family members of former patients as educators and standardized patient participants in a simulation-based curriculum surrounding difficult conversations in the NICU.⁴⁰ The only study, to our knowledge, that used simulation to improve counseling and decision making at extreme prematurity demonstrated it was able to realistically reproduce the decisional conflicts found in prenatal counseling.⁴¹ Many of these training programs occur as intensive courses over 1–3 days, and/or episodically over months (Table 3), with adult learning theory favoring booster training or spaced repetition after the initial course to maintain competency.⁴²

Virtual Patient and Virtual Reality Simulators

While simulation and standardized patient encounters have documented benefits, their use may be limited by accessibility and cost. Virtual patient simulators are evolving technologies that may represent an innovative method to enhance clinical communication skills with the advantage of flexibility to permit asynchronous learning while maintaining a similar emotional and behavioral response of the participant compared to standardized patient encounters.^43–47 One pilot study demonstrated the feasibility and potential utility of an emotionally expressive virtual perinatal counseling simulator in yielding valuable data on neonatology providers’ communication skills, including emotion recognition and empathy.⁴⁸ Increasingly, medical professionals are gaining comfort with virtual reality training through required certification courses such as the Neonatal Resuscitation Program (NRP) through added virtual reality training to their platform.⁴⁹ These technologies could be adapted for training clinicians in counseling at extreme prematurity through deliberate practice of communication skills and the potential to receive objective real-time feedback.

Medical Improvisation

Another innovative approach to teaching medical communication skills involves medical improvisation. Using improvisational theater techniques, clinicians are trained to quickly develop relationships, prepare for unpredictability, and learn to recognize and respond in the moment to changing circumstances.^50,51 This approach is grounded in experiential learning and emphasizes many skills utilized in both improv and medical communication training, including adaptability, listening, empathy, and cooperation.⁵⁰ Based on these methods, a few professional education programs demonstrated that medical improvisation training can help foster the communication skills that neonatologists need to empathetically communicate and connect with parents facing extremely premature delivery in rapidly shifting scenarios.^3,50,51

Future Innovation and Research is Needed

While many of the educational strategies discussed offer promising results to train clinicians in skills needed to provide antenatal counseling and shared decision making, continued innovation is necessary.

Bias in Counseling

It is well established that clinician attitudes and biases may alter decision making and that framing and implicit biases may impact parental decisions during prenatal counseling.^19,52 What is not known, is how to best teach clinicians the skills to recognize and balance their own preferences with parental authority. The possibility that physicians’ conscious preferences or unconscious biases may influence decision-making during periviable counseling has significant ethical implications, and future educational strategies and research must investigate how best to mitigate these biases during counseling.

Interdisciplinary & Interprofessional Counseling

In addition, despite recommendations from the American Academy of Pediatrics (AAP) and American College of Obstetrics and Gynecology (ACOG) that recommend joint specialty counseling, this is a rare occurrence in practice.^1,53 Prenatal counseling by Maternal Fetal Medicine (MFM) and neonatology are often asynchronous, which can result in conflicting messages to families.^2,54,55 Despite these recommendations and potential for poor communication, educational interventions to date have focused on single-specialty clinicians, ignoring the communication and collaboration required by MFM and Neonatology for optimal counseling at extreme prematurity.² Future educational interventions should aim to unite MFM and Neonatology, and other healthcare professions, including social work, chaplaincy, and nursing into an interdisciplinary, interprofessional program to provide cohesive, personalized counseling at extreme prematurity for families. Combining this with a relational learning approach, clinicians should have the opportunity to observe and collaborate with their interdisciplinary colleagues for effective learning.^24,26,31

Knowledge & Behavioral Assessment

There is also a need to develop and validate well-designed assessment tools to track competencies, both knowledge and performance, for trainees and faculty alike, and guide meaningful feedback on clinician communication, decision-making, and other ethical competencies described in Table 2.^56,57 While there is a growing body of literature on communicative assessment tools, these tools are limited by relying solely on a single encounter and may be impacted by the role of bias in assessment.^56,58 There remains a need to determine objective and evidence-based assessment strategies, particularly in ways that can assess shifts in clinician’s behavior in the long run.

Process Assessment & Patient-Centered Outcomes

Finally, there is little connection between research, teaching, and implementation of these teaching methodologies in practice to benefit patients and families, in other words, the impact of these strategies on patient-centered outcomes. Frameworks used for teaching and assessing counseling skills need to be studied to determine reliability and validity, to gauge their feasibility in clinical practice, and to ensure systematic and lasting implementation of the effects.^21,59 Rather than acquiring a predefined skill set, future training programs need to view the transfer of skills as continuous in both the learner and the environment.⁵⁹ This type of change is challenging as institutions may have “ethical cultures” that may reflect provider biases, influences of certain populations, or an interaction of many factors that may influence how easily or difficult a new behavior may be adopted.⁶⁰ Studies that assess the impact of the educational interventions, using Kirkpatrick’s assessment levels 3 and 4, such as family understanding and perceptions of counseling and other patient-centered outcomes, will be crucial going forward to gauge ultimate efficacy.³⁵

Conclusions

Counseling and decision-making with families facing possible delivery at the limits of viability involve complex ethical dilemmas, and the process can be emotionally exhausting and morally distressful for families and clinicians alike. Clinicians facilitating such decisions must possess the advanced communication and counseling skills needed to optimally assist families with these decisions. Educational programs dedicated to teaching these crucial competencies should incorporate adult learning theory and educational frameworks, rely on evidence-based methods, and assess for integration into clinical practice and the impact on patient-centered outcomes. There remains a great deal of research needed to accomplish this but with the engagement of perinatal healthcare clinicians across disciplines in such education and innovation, we can take the next step towards making a meaningful difference for our patients and families.