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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

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Jean

    Jean
    jean

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

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

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Ailsa Malcolm-Hutton, Diagnosed 2013,  MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013, MND Association of England, Wales and N Ireland

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

  • Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Horacio Fritzer, Argentina

    Horacio Fritzer, Argentina

  • Ali Var, Turkey

    Ali Var, Turkey

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • Liam Dwyer, England

    Liam Dwyer, England

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Brian Lovell, Diagnosed 2011 . MND Australia

    Brian Lovell, Diagnosed 2011 . MND Australia

  • Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Mike Small, Motor Neurone Disease (MND) Association, UK

    Mike Small, Motor Neurone Disease (MND) Association, UK

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

    Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • 727747090571358167

    727747090571358167

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