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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

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

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

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Dick Dayton, USA

    Dick Dayton, USA

  • 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

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • 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

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Christian Bär, Germany

    Christian Bär, Germany

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

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

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

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Ann Nicol

    Ann Nicol

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

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

  • Mauril Belanger

    Mauril Belanger

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

  • Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Roy

    Roy
    roy

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

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

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

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

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

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Lombana, Spain

    Lombana, Spain

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

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

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

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

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

  • Peng Yi-Wen

    Peng Yi-Wen

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

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