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 selffulfilling 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.

Palliative and End-of-Life Care in Stroke

“…As a result, the formulation of a survival and outcome prediction for patients with stroke should be individualized using the clinician's estimates based on their experience and the best available evidence from the literature, including model-based outcome predictions from well-validated studies. 79 This combined approach to formulating a prognostic estimate is supported by evidence in nonstroke patients that suggests that the combination of a model-based prediction with a clinician estimate may be superior to either individual approach. 80 Although uncertainty in prognosis can be unsettling for the clinician, the majority of family members of critically ill patients accept that prognostic estimates are uncertain and want providers to discuss prognosis even when it is unclear.…”

“…When one communicates prognosis in stroke, it is often more important to focus on "how well" as opposed to "how long," although both are interrelated and of immense importance. 79 This involves working with the family to (1) summarize the range of medically reasonable treatments for this patient at this particular time and (2) explain the risks and benefits of each treatment option within the personalized rubric of goals and desires set by the surrogate. This will include discussions of potential complications, the degree of impairments, the remaining abilities, and the time, pace, and range of the recovery process.…”

Neurologists as primary palliative care providers

“…and the expected quality of life ("What will my life be like?"). 8 These questions provide the clinician with an opportunity to discuss the prognosis and the typical disease trajectory honestly and in detail. Given the gravity of the news, conversations about options for life-sustaining therapies are typically best addressed at a scheduled follow-up appointment (table 2).…”

Right Brain: Breaking bad news

“…Discussing neurologic prognosis in a way that can help families and patients make decisions about their health may be a particularly important area to target. 11 For trainees, estimating prognosis in the face of limited experience risks poorly informed and vague communication to patients and families. Offering transparent and clear communication with families about prognosis, even in the face of prognostic uncertainty, is challenging and necessary.…”