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December 2021; 11 (6) Review

Delivering Bad News in Amyotrophic Lateral Sclerosis

Proposal of Specific Technique ALS ALLOW

Wesleigh F. Edwards, Sahana Malik, Jonathan Peters, Ivy Chippendale, John Ravits
First published September 4, 2020, DOI: https://doi.org/10.1212/CPJ.0000000000000957
Wesleigh F. Edwards
University of California San Diego School of Medicine (WFE, SM, JP, IC, JR); Department of Internal Medicine (WFE), Scripps Green Hospital and Clinic, La Jolla, CA; Cooper Medical School of Rowan University (SM), Camden, NJ; Department of Neurosciences (JP, JR), University of California, San Diego; and University of New England College of Osteopathic Medicine (IC), Biddeford, ME.
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Sahana Malik
University of California San Diego School of Medicine (WFE, SM, JP, IC, JR); Department of Internal Medicine (WFE), Scripps Green Hospital and Clinic, La Jolla, CA; Cooper Medical School of Rowan University (SM), Camden, NJ; Department of Neurosciences (JP, JR), University of California, San Diego; and University of New England College of Osteopathic Medicine (IC), Biddeford, ME.
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Jonathan Peters
University of California San Diego School of Medicine (WFE, SM, JP, IC, JR); Department of Internal Medicine (WFE), Scripps Green Hospital and Clinic, La Jolla, CA; Cooper Medical School of Rowan University (SM), Camden, NJ; Department of Neurosciences (JP, JR), University of California, San Diego; and University of New England College of Osteopathic Medicine (IC), Biddeford, ME.
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Ivy Chippendale
University of California San Diego School of Medicine (WFE, SM, JP, IC, JR); Department of Internal Medicine (WFE), Scripps Green Hospital and Clinic, La Jolla, CA; Cooper Medical School of Rowan University (SM), Camden, NJ; Department of Neurosciences (JP, JR), University of California, San Diego; and University of New England College of Osteopathic Medicine (IC), Biddeford, ME.
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John Ravits
University of California San Diego School of Medicine (WFE, SM, JP, IC, JR); Department of Internal Medicine (WFE), Scripps Green Hospital and Clinic, La Jolla, CA; Cooper Medical School of Rowan University (SM), Camden, NJ; Department of Neurosciences (JP, JR), University of California, San Diego; and University of New England College of Osteopathic Medicine (IC), Biddeford, ME.
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Citation
Delivering Bad News in Amyotrophic Lateral Sclerosis
Proposal of Specific Technique ALS ALLOW
Wesleigh F. Edwards, Sahana Malik, Jonathan Peters, Ivy Chippendale, John Ravits
Neurol Clin Pract Dec 2021, 11 (6) 521-526; DOI: 10.1212/CPJ.0000000000000957

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Abstract

Purpose of Review Physician communication skills are a critical part of care for amyotrophic lateral sclerosis (ALS) patients and caregivers. They shape the development of autonomy and quality of life, and they mitigate emotional trauma. Communication skills are especially critical at 2 different time points in the course of the disease: early when delivering and establishing the diagnosis, and later when clarifying goals of care.

Recent Findings Several techniques for physician communication of difficult information are available, including SPIKES (Setting up the interview, assessing the patient's Perception, obtaining the patient's Invitation, giving Knowledge and information to the patient, addressing the patient's Emotions with Empathetic responses, and Strategy and Summary), ABCDE (Advance preparation, Build a therapeutic environment/relationship, Communicate well, Deal with patient and family reactions, Encourage and validate emotions), and BREAKS (Background, Rapport, Exploring, Announce, Kindling, Summarize). These emphasize the physician's accountability and responsibility for communicating effectively. Formal training in these techniques is limited, and their applicability specifically to ALS is inexact.

Summary We propose an ALS-specific technique which we call ALS ALLOW to guide physicians in conducting difficult communications with ALS patients and caregivers to develop their understanding, establish autonomy, set goals, and mitigate emotional trauma. The techniques are useful in discussions both early and late stages in the disease.

Footnotes

  • Funding information and disclosures are provided at the end of the article. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.

  • Received April 20, 2019.
  • Accepted April 24, 2020.
  • © 2021 American Academy of Neurology
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  • Article
    • Abstract
    • Defining Bad News
    • Importance of Delivering bad News Effectively
    • Challenges of Conveying Bad News
    • Bad News Delivery Techniques
    • Challenges for Amyotrophic Lateral Sclerosis Patients and Their Caregivers
    • ALS-Specific Recommendations
    • Conclusion and Recommendations
    • Study Funding
    • Disclosure
    • Appendix Authors
    • Footnotes
    • References
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