Pediatric Bioethics: Embracing Uncertainty

Facing uncertainty is one of the few constants in medicine. Clinicians across specialties and professions often face uncertainty in patient care, yet it remains one of the most anxiety-provoking aspects of clinical practice. Humans are uncomfortable with uncertainty and can cope with poor but certain outcomes better than multiple potential outcomes.

In the health care setting, uncertainty in illness has been broadly defined as ‘‘the inability to determine the meaning of illness related events.”¹ Uncertainty occurs due to the inherent ambiguity, complexity and unpredictability of illness, as well as paucity of information about a patient’s illness or its potential consequences.

There are many types of uncertainty. Diagnostic uncertainty occurs when the underlying cause of a patient’s symptoms cannot be identified. There can also be uncertainty around the right treatment plan, or the risks and benefits of different treatments. But perhaps the most troubling form of uncertainty for patients, families and clinicians is prognostic uncertainty, the inability to predict the future impact of the disease on the life and wellbeing of the patient.

For some conditions, population data exist derived from empirical observations of outcomes in a given population or cohort. This information can be useful in describing the range of outcomes that are likely to occur, or even the probabilistic future occurrence or non-occurrence of those possible outcomes occurring. However, there are often limitations to these data, such as the overall strength or reliability of the evidence, whether it is current, if it has been impacted by confounding factors, or how well it aligns with the patient’s specific situation. For example, there could be an excellent study of outcomes for the patient’s disease, but the population from which it was derived may not be representative of the specific patient you are caring for. Further, the population outcomes could be influenced by heterogenous individual decisions about treatments or whether participants were deemed candidates for a given therapy. In such cases, clinicians may be eager to share what feels like precise and scientific statistical risk estimates; however, the data presented in the study might not correlate meaningfully with the actual outcome probabilities faced by the patient.

For many conditions, no population data exist. For these conditions that have variable presentations or low prevalence, clinicians’ individual experience or gestalt may be the best substitute for empirical evidence to provide more tailored estimates, but such predictions can be obfuscated by bias and misconceptions. Nevertheless, avoiding prognostication discussions altogether because of the inherent uncertainty leaves patients and families with anxiety and robs them of their ability to make informed decisions according to their values. So how does one proceed?

No physician can foretell their patient’s future, but there are some approaches that can help when communicating uncertainty that can support families in these complex conversations.

First, gain an understanding of how prognostic information will be useful to the patient and family. Will this information impact decisions they are facing about treatments or goals of care, or will it help them set expectations and anticipate the road ahead? Listen to their values around the possible outcomes and consider what prognostic information would be helpful.

Second, be transparent about the uncertainty in discussions — what is known, what is not known, and what cannot be known. Presenting an overly certain appraisal of the anticipated course to gain a parent’s or patient’s confidence, or to influence a decision, will ultimately backfire if the prediction is wrong. Likewise, if it seems apparent that the prognosis is poor, avoiding this serious news under the guise of uncertainty will not ultimately build trust, and may hinder decision-making. Instead, honest communication about what the anticipated prognosis is, and what this prediction is based on, can empower patients to envision a future that aligns with their goals and preferences, whatever the likely outcome may be.

Finally, cultivate empathy and acknowledge the emotions that an uncertain prognosis can foster. Yes, not knowing the future creates anxiety; but it also allows room for hope. Sometimes, especially when the prognosis is expected to be poor, knowing that there is an improbable, but possible, good outcome can drastically change the patient’s and family’s outlook and experience in an otherwise seemingly dark time.

As clinicians, we must learn to embrace uncertainty in medicine, acknowledging that ambiguity is part of the complexity that makes caring for patients interesting and fulfilling. A recent study of neonatologists noted that tolerance for uncertainty fluctuates, but overall increases over the course of one’s career.² Grappling with uncertainty is challenging for humans, yet it is an essential part of the human experience. Helping patients navigate an uncertain future is a privilege for physicians, but achieving engagement at this level requires a commitment to personal growth and holding space for uncomfortable feelings. In cultivating honest communication and empathy, as well as developing tolerance for and even embracing uncertainty, clinicians may accompany parents and patients through their most challenging unknowns and honor the humanistic side of medicine.

References:

1. Mishel MH. Reconceptualization of the uncertainty in illness theory. Image J Nurs Sch. 1990; 22:256-262. doi:10.1111/j.1547-5069.1990.tb00225.x
2. Rholl E, Krick JA, Leuthner SR, Pan AY, Challa SA, Kukora S. Neonatologists’ perceptions of uncertainty: a national survey. J Perinatol. 2025. doi:10.1038/s41372-025-02292-3