Estimating and communicating prognosis in advanced neurologic disease

Abstract

Prognosis can no longer be relegated behind diagnosis and therapy in high-quality neurologic care. High-stakes decisions that patients (or their surrogates) make often rest upon perceptions and beliefs about prognosis, many of which are poorly informed. The new science of prognostication--the estimating and communication "what to expect"--is in its infancy and the evidence base to support "best practices" is lacking. We propose a framework for formulating a prediction and communicating "what to expect" with patients, families, and surrogates in the context of common neurologic illnesses. Because neurologic disease affects function as much as survival, we specifically address 2 important prognostic questions: "How long?" and "How well?" We provide a summary of prognostic information and highlight key points when tailoring a prognosis for common neurologic diseases. We discuss the challenges of managing prognostic uncertainty, balancing hope and realism, and ways to effectively engage surrogate decision-makers. We also describe what is known about the nocebo effects and the self-fulfilling prophecy when communicating prognoses. There is an urgent need to establish research and educational priorities to build a credible evidence base to support best practices, improve communication skills, and optimize decision-making. Confronting the challenges of prognosis is necessary to fulfill the promise of delivering high-quality, patient-centered care.

Figure 1. Trajectories to death and disability by neurologic disease

The period of evident, predictable decline before death trajectory is typical of cancer and amyotrophic lateral sclerosis. The chronic illness with entry/reentry is associated with organ failure and relapses as in multiple sclerosis and epilepsy. The prolonged dwindling trajectory is associated with dementia, frailty, and other neurodegenerative conditions (e.g., Parkinson disease). The sudden neurologic impairment trajectory represents a distinct group of neurologic emergencies, the majority of which are the subset of patients with stroke, hypoxic ischemic encephalopathy, and traumatic brain injury who present with severe neurologic symptoms. This figure was published in Andreoli and Carpenter's Cecil Essentials of Medicine. Copyright Elsevier 2010.

Figure 2. Reducing error and de-biasing strategies when formulating and communicating prognosis