• 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

  • Bjarne Hytjanstorp, Norway

    Bjarne Hytjanstorp, Norway

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Josée Kolijn-de Man, Netherlands

    Josée Kolijn-de Man, Netherlands

  • Yessenia Hernandez Mendoza, Mexico

    Yessenia Hernandez Mendoza, Mexico

  • Daniela Maria Daverio, Argentina

    Daniela Maria Daverio, Argentina

  • Sally Pauls, USA

    Sally Pauls, USA

  • Nicholas (Nic) Bowman, South Africa

    Nicholas (Nic) Bowman, South Africa

  • Graham Johnson, Australia

    Graham Johnson, Australia

  • Fayette Underwood, USA

    Fayette Underwood, USA

  • Anita Forte, USA

    Anita Forte, USA

  • Charlie Dourney, USA

    Charlie Dourney, USA

  • Mirca Bersani, Italy

    Mirca Bersani, Italy
    MircaBersani

  • Rob Tison, USA

    Rob Tison, USA

  • Jo Knowlton, Scotland

    Jo Knowlton, Scotland

  • Wiebke Braach, Germany

    Wiebke Braach, Germany

  • Hollister

    Hollister
    hollister

  • Sanjay Kumar Srivastava, India

    Sanjay Kumar Srivastava, India

  • Yannick Richard, Canada

    Yannick Richard, Canada
    yannickrichard

  • Shay Rishoni, Israel

    Shay Rishoni, Israel

  • Aida Trzmiel de Guterman, Argentina

    Aida Trzmiel de Guterman, Argentina

  • Den Haag, Netherlands

    Den Haag, Netherlands

  • Ana Lilia Rodriguez, Mexico

    Ana Lilia Rodriguez, Mexico

  • Conny van der Meijden, Netherlands

    Conny van der Meijden, Netherlands

  • Ana María Zavala, Mexico

    Ana María Zavala, Mexico

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Kirsty Gerlach, New Zealand

    Kirsty Gerlach, New Zealand

  • Margreth Burger-Saile, Switzerland

    Margreth Burger-Saile, Switzerland

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Torben Mikkelsen, Denmark

    Torben Mikkelsen, Denmark

  • Ian Roberts, Australia

    Ian Roberts, Australia

  • Andrea Zicchieri, Italy

    Andrea Zicchieri, Italy
    AndreaZicchieri_conSLAncioItaly

  • Joyce Rusinak, USA

    Joyce Rusinak, USA

  • Shay Rishoni, Netherlands

    Shay Rishoni, Netherlands

  • Liz Ogg, Scotland

    Liz Ogg, Scotland

  • Maria Lucia Wood Saldanha, Brazil

    Maria Lucia Wood Saldanha, Brazil

  • Jean Waters, UK

    Jean Waters, UK

  • Horacio Fritzer, Argentina

    Horacio Fritzer, Argentina

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Bayley, Australia

    Bayley, Australia

  • Duncan Bayly, Australia

    Duncan Bayly, Australia

  • Liong Ting Ngu, Malaysia

    Liong Ting Ngu, Malaysia

  • Shay Rishoni, Israel

    Shay Rishoni, Israel

  • Dick Dayton, USA

    Dick Dayton, USA

  • Anna Barrow, UK

    Anna Barrow, UK

  • Mike Rannie, Canada

    Mike Rannie, Canada

  • Anderson Custodio Pinto, Brazil

    Anderson Custodio Pinto, Brazil

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Irene McCaughey, Australia

    Irene McCaughey, Australia

  • Mary Thomas, Australia

    Mary Thomas, Australia

  • Shera Mukherjee, India

    Shera Mukherjee, India

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