Expanding Our Understanding of Moral Distress in the NICU

Moral distress is prevalent in many areas of medicine, including the NICU.¹  Defined as “knowing the right thing do to, but feeling powerless to do it,” moral distress was initially thought to be experienced primarily by bedside nurses related to constraint from the medical team’s hierarchy.¹  However, we now recognize that all health care team members experience moral distress, and the increasing complexity of health care delivery has increased the prevalence of moral distress.^2,3 

In this issue of Pediatrics, Prentice et al use a mixed-method study to assess moral distress in 525 neonatologists, trainees, and nurses in relation to 99 patients <28 weeks’ gestation over their NICU course. At any given time, moral distress was reported by 15%, with some variability across health care providers. Reasons for experiencing moral distress were infant-centered, such that the burden of intensive interventions outweighs the benefit, management plans, family-centered, parental decision-making, or provider-centered personal reasons, such as discomfort with uncertainty. Attending neonatologists were less likely to experience moral distress (6.4% of the time) than fellows (19.6%), residents (17.5%), or nurses (16.9%).⁴  This study highlights a potential paradigm shift in the source of constraint-type moral distress because it seems to be related to factors other than the traditional medical hierarchy in the NICU, as previously believed. The era of shared decision-making has led to the incorporation of parental values, ideas, and preferences in care plans, expanding potential sources of moral constraint beyond the physician because the views of all stakeholders are taken into account when developing a care plan.^2,5,6  The medical team and family balance often-competing principles of autonomy, beneficence, and nonmaleficence in a way that decreases parental stress and promotes the best patient outcome. However, the zone of parental discretion, especially when parental views diverge from what the medical team recommends or feels is the right treatment course, can lead to challenging and uncomfortable situations for providers. In these situations, elimination of uncertainty in the perceived clinical status and likely outcomes, transparency in complex discussions, a shared decision-making approach to care in which providers gain insight into the values and views that drive parental decisions, and involvement in the care plan may reduce moral distress. Given the neonatologists’ level of involvement in discussions with the family and the decision-making process, they may develop a deeper understanding of parental values and goals.

This understanding of parental values and knowledge of how the family views the child, their hopes, and their understanding of the immediate and long-term outcomes allows the provider to feel confident that the decisions made, irrespective of personal views, are informed and based on the family’s determination of best interest for the infant. Similar to how personal views and experiences shape goals of care and decisions families make, clinicians’ experiences contribute to their views and likely their perception of moral distress. Studies examining the impact of previous personal and professional experiences with complex medical situations, individuals with significant cognitive or physical disabilities, and uncertain outcomes are needed to understand how they contribute to the evolution of moral distress over time. These experiences may add to why some neonatologists acknowledge more moral distress early in their career.

In this study, moral distress, internal struggle, and discomfort with uncertainty were most often reported by trainees.⁴  This raises an important question: does current training address the experience of moral distress in a structured way to provide adequate resources for trainees to process ethically challenging situations encountered in clinical care? Their unique role places them at risk for constraint distress because they may feel obligated to provide care and may not have the ability to voice their concerns or disagreements.^7,8  This is important because trainees, and all clinicians who experience moral distress, are at high risk for burnout, detachment, disengagement, and contribution to adverse patient outcomes.^1,7–13 

The authors of this study propose self-reflection as a tool to combat moral distress and increase the understanding of situations by which it is generated.⁴  We must also consider how trainees are eliciting and perceiving parental goals and values, their understanding of the current limitations in prognostication, and the impact of the trainee’s previous experiences as a framework for how they may be affected by morally distressing circumstances. Furthermore, the nuanced and flexible approach to decision-making in the face of extreme uncertainty encountered with periviability, possible life-limiting diagnoses, or other medically complex situations in the NICU must be incorporated into medical training early. With experience, trainees’ thought processes often progress from a more concrete framework to a flexible and responsive approach based on the evolving clinical picture. Moral distress remains a concern that warrants attention and reflection in the NICU. Clinicians feel it is a byproduct of being a compassionate, caring provider who is invested in their patient.^14,15  Moral distress allows an opportunity for introspection to acknowledge the individual’s biases and can lead to innovation and progress in patient care. Given the burdens associated with moral distress, however, strategies to reduce the negative impacts are needed. Medical training provides the perfect venue to incorporate beneficial practices that can be established early on. Despite this study’s finding, no association of moral distress with the degree of satisfaction with ethics exposure during training,¹⁶  other tools, such as communication training through the use of simulation, multidisciplinary meetings, and structured personal reflection may facilitate the development of valuable skills for physician trainees so they are better equipped to reduce levels of moral distress in the NICU.