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International Alliance of ALS/MND Associations

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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

  • Bob Simonds and Drew O'Neill , Les Turner ALS Foundation, USA

    Bob Simonds and Drew O’Neill , Les Turner ALS Foundation, USA

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Liam Dwyer, England

    Liam Dwyer, England

  • Wilfried Leusing

    Wilfried Leusing

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • IMG_1211

    IMG_1211

  • Dad

    Dad

  • Osiel Mendoza, Diagnosed 2016 ,  ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 , ALS Therapy Development Institute, USA

  • Christian Bär, Germany

    Christian Bär, Germany

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

    João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

  • Glen Elison,  ALS Hope Foundation,  Diagnosed 2019,  USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

    Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

  • Susan Anderson, Diagnosed 2014 , Hope Loves Company,  USA

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

    H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

  • Willi Klein

    Willi Klein

  • Brian Parsons

    Brian Parsons

  • 83

    83

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

    David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

  • Daniel Hare

    Daniel Hare

  • Ian Roberts

    Ian Roberts

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Roy

    Roy
    roy

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Ali Var, Turkey

    Ali Var, Turkey

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • Tison, USA

    Tison, USA

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • unnamed

    unnamed

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