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The One Thing Certain in the ICU Is Uncertainty
Abstract & Commentary
By Richard J. Wall, MD, MPH, Pulmonary Critical Care & Sleep Disorders Medicine, Southlake Clinic, Valley Medical Center, Renton, WA, is Associate Editor for Critical Care Alert.
Dr. Wall reports no financial relationship to this field of study.
Synopsis: This study showed that surrogate decision-makers with a loved one in the ICU want clinicians to discuss the patient's prognosis, even if it is uncertain.
Source: Evans LR, et al. Surrogate decision-makers' perspectives on discussing prognosis in the face of uncertainty. Am J Respir Crit Care Med 2009;179:48-53.
While ICU clinicians understand that prognostic uncertainty is a normal part of critical care, it is unclear if surrogates hold similar views. In this study, Evans et al conducted semi-structured face-to-face interviews with 179 surrogates who had an adult patient in the ICU. The study included patients from 4 tertiary academic ICUs (2 medical-surgical, 1 neurological, 1 cardiac). Patients were eligible if they had a high risk of dying (APACHE score ≥ 25). Interviews took place on days 3-5 of mechanical ventilation. Interviews were audiotaped, transcribed, and analyzed using a qualitative comparative methods framework. To improve validity, the conceptual framework was presented to a sample of study subjects and modified based upon their input.
Overall, most surrogates (87%) want physicians to discuss prognosis, even if it is uncertain. The researchers identified several reasons for this sentiment: 1) surrogates view prognostic uncertainty as unavoidable; 2) surrogates view physicians as the best source of prognostic information; 3) prognostic uncertainty leaves room for hope; 4) information exchange fosters trust in the physician; and 5) prognostic discussions allow families to prepare for the worst and make decisions.
Although the researchers did not intentionally inquire about it, many surrogates offered unsolicited suggestions for physicians who must discuss an uncertain prognosis. One suggestion was to use language that clearly conveys uncertainty. For example, avoid making absolute predictions and instead use percentages or ranges. Also let families know that probabilities can change. Surrogates also stated that physicians should err on the side of "complete honesty" and disclose all available information. Of note, 12% of surrogates felt physicians should avoid discussing an uncertain prognosis. However, some of them stated such information might be discussed at a later date so long as it was presented in a certain way. Thus, the vast majority of surrogates want information even if it is uncertain.
Surrogate decision-makers are necessary in the ICU because many critically ill patients are unable to make their own decisions. Studies confirm that ICU surrogates want complete and honest communication, and clinician-family communication is perhaps the most important factor driving family satisfaction with care in the ICU.1 For this reason, understanding the perspectives of surrogate decision-makers is an important undertaking for improving ICU quality.
This study found that most (albeit not all) surrogates of critically ill patients want physicians to fully disclose prognostic estimates, even if they might be incorrect. Like physicians, most surrogates understand that prognostic uncertainty is unavoidable in the ICU. Unfortunately, I think many physicians avoid discussing uncertainty with families because it makes them feel clinically inadequate. Numerous studies support this notion, including the landmark SUPPORT trial which found that < 20% of physicians discuss prognostic information with seriously ill hospitalized patients.2 Likewise, another study found that 80% of internists avoid discussing the patient's prognosis if the prognosis is not certain.3
Why do clinicians avoid discussing uncertainty? The authors posit that discussing uncertainty forces clinicians to acknowledge the limits of their medical knowledge. Another explanation is that clinicians want to avoid causing patients and families undue distress. Ironically, these clinician sentiments are misguided. Discussing uncertainty is viewed by surrogates as delivering better care because it increases trust between the family and physician and also gives families a chance to prepare for possible bereavement. The latter is especially important because lack of preparation for bereavement increases risk for adverse psychological outcomes such as depression.
Several underlying assumptions in this field remain untested. For example, it is unknown if surrogates truly comprehend the complicated concepts of probability, comorbidity, and prognostic uncertainty. Regardless, I think the message from the current study is straightforward: Talk to patients and their families. There is an enormous desire for information exchange among families in the ICU. When performed properly, the act of communication (which involves listening and not just talking) is sometimes the most potent therapy we deliver.