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February 19, 2013; 80 (8) Contemporary Issues: Innovations in Education

Estimating and communicating prognosis in advanced neurologic disease

Robert G. Holloway, Robert Gramling, Adam G. Kelly
First published February 18, 2013, DOI: https://doi.org/10.1212/WNL.0b013e318282509c
Robert G. Holloway
From the Departments of Neurology (R.G.H., A.G.K.) and Community and Preventive Medicine (R.G.H., R.G.), and Center for Ethics, Humanities, and Palliative Care (R.G.H., R.G.), Department of Family Medicine (R.G.), University of Rochester, NY.
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Robert Gramling
From the Departments of Neurology (R.G.H., A.G.K.) and Community and Preventive Medicine (R.G.H., R.G.), and Center for Ethics, Humanities, and Palliative Care (R.G.H., R.G.), Department of Family Medicine (R.G.), University of Rochester, NY.
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Adam G. Kelly
From the Departments of Neurology (R.G.H., A.G.K.) and Community and Preventive Medicine (R.G.H., R.G.), and Center for Ethics, Humanities, and Palliative Care (R.G.H., R.G.), Department of Family Medicine (R.G.), University of Rochester, NY.
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Citation
Estimating and communicating prognosis in advanced neurologic disease
Robert G. Holloway, Robert Gramling, Adam G. Kelly
Neurology Feb 2013, 80 (8) 764-772; DOI: 10.1212/WNL.0b013e318282509c

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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.

GLOSSARY

DNR=
do not resuscitate

Footnotes

  • Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.

  • Supplemental data at www.neurology.org

  • Received May 11, 2012.
  • Accepted September 19, 2012.
  • © 2013 American Academy of Neurology
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Disputes & Debates: Rapid online correspondence

  • Prognosticating early and accurately
    • Nitin K. Sethi, Assistant Professor of Neurology, New York-Presbyterian Hospital, Weill Cornell Medical Center 525 East 68th Street, New York, NY 1006sethinitinmd@hotmail.com
    • Nitin K Sethi, New York, NY
    Submitted March 07, 2013
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