• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • LinkedIn
  • Twitter
  • YouTube

International Alliance of ALS/MND Associations

  • Members' Login
  • Contact
  • Join the Alliance
  • Donate
  • Understanding ALS/MND
    • What is ALS/MND
    • Genetics
    • Diagnosis
    • Glossary
    • Navigating the Community
  • Find a Member Association
  • Support for PALS & CALS
    • Fundamental Rights for People with ALS/MND and Caregivers
    • Research
      • Voice Preservation
      • Open Science
        • Open Label Extension
      • Expanded Access
      • Understanding ALS/MND Research
      • Improving Regulatory Pathways
      • Right to Try
      • US FDA Orphan Drug Designation
      • Unproven (Off-Label) Treatments
    • Advocacy
      • Advocacy Toolkit
      • Emergency Preparedness Toolkit
      • Equitable Access to Therapies
      • Recommendations for Trial Sponsors
    • Clinical Care
      • Genetic Counselling & Testing
      • Mental Health Support
      • Nursing and Symptom Management
      • Nutrition and Swallowing
      • Occupational Therapy and Activities of Daily Living
      • Physiotherapy and Mobility
      • Respiratory Care
      • Speech Therapy and Communication
      • Support for Family & Caregivers
      • Technology
      • Global Clinic Locator
    • Drugs in Development
      • AB Science – Masitinib
      • BrainStorm Cell Therapeutics – NurOwn
      • Clene Nanomedicine – CNM-Au8
      • ILB – Tikomed
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Neuronata-R/Lenzumestrocel
      • NeuroSense – PrimeC
      • Neuvivo – NP001
      • Prilenia Therapeutics – Pridopidine
      • SOD1 Therapies & Trials
      • SPG302
      • T Regulatory Cell Therapies
      • Ulefnersen – Ionis Pharmaceuticals
    • Approved Drugs
      • Nuedexta
      • Radicava/Edaravone
      • Riluzole/Tiglutik
      • Rozebalamin/Methylcobalamin
      • Tofersen/Qalsody
    • Drugs No Longer in Development
      • Amylyx – AMX0035
      • Collaborative Medicinal Development – CuATSM
      • Cytokinetics – Reldesemtiv
      • Orphazyme – Arimoclomol
      • TUDCA Trial
  • Support for Health Professionals
    • Breaking the News in ALS/MND
  • Events/Programs
    • Calendar of Events/Programs
    • Global Day Calendar
    • Alliance Meeting
    • Allied Professionals Forum
    • “Day in the Life Of” Suite
    • Alliance Webinars
    • ALS/MND Connect
    • March of Faces
    • Patient Fellows Program
    • Alliance Fellows
    • SEED Grant Program
    • International Symposium
  • About
    • Who We Are
    • ALS/MND Health Literacy Map
    • Board of Trustees
    • Councils, Forums & Committees
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Advocacy and Public Policy Forum
      • Research Directors Forum
      • Governance Committee
      • Finance Committee
    • Staff
    • History
    • Newsletter Archive
    • Awards
      • Forbes Norris Award
      • Humanitarian Award
      • Allied Health Professional Award
      • Student Innovation Award
  • Members
    • Member Registration
    • Forgot Password

Breaking the News in ALS/MND

A Primer for Physicians and Allied Health Professionals

Learning objectives:

  • Describe the impact delivering news in ALS/MND can have on patients, caregivers and healthcare professionals
  • Identify and address personal biases and perspectives on ALS/MND, death and dying
  • Recognize and apply best practices in delivering news to people living with ALS/MND and their caregivers
  • Respond to patient/caregiver distress when receiving the news
  • Apply the A-L S-PIKES technique in clinical practice to improve confidence and comfort in delivering news

Resources

  • How to Break the News – Slides
  • Evaluation Form
  • Invitation
  • Participant Handout
  • Speaker Guide
  • Journal Article: How to Break the News in ALS/MND: Practical Guidelines from Experts

Also available in French:

  • Participant Handout (French)
  • Speaker Guide (French)

Videos

Please find below the videos from the How to Break the News in ALS/MND program. (These videos are also available in Spanish on the Asociación ELA Argentina website.)

Why Was This Program Created?

Dr. Genge shares her initial experiences in delivering news to people living with ALS/MND as a young Neurology Fellow, and explains how this led to the development of multidisciplinary centres of excellence in ALS/MND and the learnings shared in this educational program.

https://www.als-mnd.org/wp-content/uploads/2023/01/Why_Genge_slide10.mp4

A Caregiver’s Experience Receiving the Diagnosis 

https://www.als-mnd.org/wp-content/uploads/2024/06/caregiver_experience_bulat_part_1.mp4

A Caregiver’s Perspective on How Challenging Delivering a Diagnosis Must be for Clinicians

https://www.als-mnd.org/wp-content/uploads/2023/09/caregiver_experience_bulat_part_2.mp4

“Know Thyself” Before the Meeting

Dr. Kavanaugh explains how this exercise can help healthcare professionals identify any personal perceptions and/or biases that they may have toward death and/or dying which could impact their delivery of news to people living with ALS/MND and their caregivers.

https://www.als-mnd.org/wp-content/uploads/2023/01/KnowThyself_Kavanaugh_slide24.mp4

Mindfulness Exercise

This exercise builds on the previous “know thyself” exercise and focusses on helping healthcare professionals identify and respond to any of their own personal feelings and emotions that could affect how they communicate news to people living with ALS/MND.

https://www.als-mnd.org/wp-content/uploads/2023/01/Mindfulness_Kavanaugh_slide26.mp4

Reasons for Hope

Dr. Genge emphasizes the reasons for hope in ALS/MND, including current treatments that prolong survival and functioning, novel treatments under investigation, and the “army” of researchers around the globe that are working to find a cure.

https://www.als-mnd.org/wp-content/uploads/2023/01/Hope_Genge_slide32.mp4

When the Emotions Become Overwhelming

Dr. Kavanaugh provides key tips to follow when emotions become overwhelming.

https://www.als-mnd.org/wp-content/uploads/2023/01/Emotions_Kavanaugh_slide38.mp4

Clinical Pearls: How To Deliver an ALS/MND Diagnosis

Dr. O’Connell provides some of her key clinical pearls on how to best deliver an ALS/MND diagnosis.

https://www.als-mnd.org/wp-content/uploads/2023/01/How_OConnell_slide-41.mp4

Clinical Pearls: What to Discuss When Delivering an ALS/MND Diagnosis

Dr. O’Connell provides some of her key clinical pearls on what to discuss when delivering an ALS/MND diagnosis.

https://www.als-mnd.org/wp-content/uploads/2023/01/What_OConnell_slide-42.mp4

Clinical Pearls for Allied Healthcare Professionals (AHPs) in the “Aftermath” Period

Dr. Kavanaugh shares some important clinical pearls for AHPs in the “aftermath” period following delivery of an ALS/MND diagnosis.

https://www.als-mnd.org/wp-content/uploads/2023/01/ClinicalPearlsAHP_Kavanaugh_slide46.mp4

A-L S-PIKES for AHPs

Dr. Kavanaugh explains how AHPs can apply and integrate the A-LS-PIKES protocol throughout the entire disease trajectory in ALS/MND to help ensure the needs of patients and caregivers are met.

https://www.als-mnd.org/wp-content/uploads/2023/01/ProtocolAHP_Kavanaugh_slide47.mp4

Person Living with ALS/MND Sharing His Thoughts and Experience

In this impactful video, Norman MacIsaac, a person living with ALS/MND, shares his experience when first receiving his diagnosis as well as his thoughts and comments on this program. Norman was diagnosed in 2014. Since then, he has been an active advocate for people living with ALS/MND. He collaborates with ALS Quebec, ALS Canada and the International Alliance of ALS/MND Associations.

https://www.als-mnd.org/wp-content/uploads/2023/01/Experience_MacIsaac_slide49.mp4

Primary Sidebar

  • Hollister

    Hollister
    hollister

  • Duncan Bayly, Australia

    Duncan Bayly, Australia

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Liam Dwyer, England

    Liam Dwyer, England

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Lucy Lintott, Scotland

    Lucy Lintott, Scotland

  • Frank Taylor, USA

    Frank Taylor, USA

  • Shay Rishoni, Israel

    Shay Rishoni, Israel

  • Orly Dichoso, Canada

    Orly Dichoso, Canada

  • Ching-Liang Chu, Taiwan

    Ching-Liang Chu, Taiwan

  • Margreth Burger-Saile, Switzerland

    Margreth Burger-Saile, Switzerland

  • Daniela Maria Daverio, Argentina

    Daniela Maria Daverio, Argentina

  • Andrietta, Italy

    Andrietta, Italy
    Andrietta

  • Danny Reviers, Belgium

    Danny Reviers, Belgium
    DannyReviers

  • Ali Var, Turkey

    Ali Var, Turkey

  • Seckin McGuirk, England

    Seckin McGuirk, England

  • Manuel Arn, Switzerland

    Manuel Arn, Switzerland

  • Federica Mastrosimone, Italy

    Federica Mastrosimone, Italy

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Mike Small, UK

    Mike Small, UK

  • Nicholas (Nic) Bowman, South Africa

    Nicholas (Nic) Bowman, South Africa

  • Mauril Belanger, Canada

    Mauril Belanger, Canada

  • Fabio Carvalho, Brazil

    Fabio Carvalho, Brazil

  • Marcelo Farinelli, Brazil

    Marcelo Farinelli, Brazil

  • Hiroshi Matsuyama, Japan

    Hiroshi Matsuyama, Japan

  • PALS and CALS, Singapore

    PALS and CALS, Singapore

  • Hanne Stenmose, Denmark

    Hanne Stenmose, Denmark

  • Norm MacIsaac, Canada

    Norm MacIsaac, Canada

  • Mauril Bélanger, Canada

    Mauril Bélanger, Canada

  • Monica Soriano, Argentina

    Monica Soriano, Argentina

  • Christian Bär, Germany

    Christian Bär, Germany

  • Enzo Maccarrone, Italy

    Enzo Maccarrone, Italy

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Shay Rishoni, Israel

    Shay Rishoni, Israel

  • Camilla Heiberg Freiberg, Denmark

    Camilla Heiberg Freiberg, Denmark

  • Steve Gallagher, Canada

    Steve Gallagher, Canada
    Picture1

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Ali Var, Turkey

    Ali Var, Turkey

  • Ian Roberts, Australia

    Ian Roberts, Australia

  • Liz Ogg, Scotland

    Liz Ogg, Scotland

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Jorge Luis Fernández Romero, Mexico

    Jorge Luis Fernández Romero, Mexico

  • Conny van der Meijden, Netherlands

    Conny van der Meijden, Netherlands

  • David Bishop, UK

    David Bishop, UK

  • Claudia Cominetti, Italy

    Claudia Cominetti, Italy

  • David Hall, USA

    David Hall, USA

  • Mike Cels, Canada

    Mike Cels, Canada

  • Tso-Ta Huang, Taiwan

    Tso-Ta Huang, Taiwan

  • Willi Klein, UK

    Willi Klein, UK

  • Vincent Bourque, Canada

    Vincent Bourque, Canada
    vincent_bourque

Learn more about the March of Faces

Footer

Stay connected to the global ALS/MND community.

Subscribe to receive our newsletter and updates on how to get involved across the Alliance network.

 
This field is for validation purposes and should be left unchanged.
  • Email
  • Facebook
  • LinkedIn
  • Twitter
  • YouTube
Return to top of page

Contact | Disclaimer | Privacy Notice & Cookies | Sitemap

Copyright © 2026 The International Alliance of ALS/MND Associations. All rights reserved.


Registered in England: Charity Number 1079504 · Site built by graphics.coop · Powered by WordPress · Members' login