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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

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    IMG_1211

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

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    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

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

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

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    Bob Simonds and Drew O’Neil, USA

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    Alan Liz Ogg 29042016 000799 lo res

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

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

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

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    727747090571358167

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
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  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
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  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
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  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

  • Fabio Correia

    Fabio Correia

  • Peng Yi-Wen

    Peng Yi-Wen

  • Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

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  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

    Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

  • Willi Klein

    Willi Klein

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

  • Jeff Sutherland

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  • Christian Bär, Germany

    Christian Bär, Germany

  • Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

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    Oliver Juenke, DGM, Germany

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    March of Faces Photo Submission_OLGA_ELA ARGENTINA

  • Kirsten Harley,  Diagnosed 2013,  Australia

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  • Maurice Leclerc, Canada

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  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

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    393647_2252248542053_984912751_n

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Jon Newsome, USA

    Jon Newsome, USA

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

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

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

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