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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

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Chen Chun-Chin

    Chen Chun-Chin

  • Daniel Hare

    Daniel Hare

  • Steve Gallagher, ALS Society of Canada

    Steve Gallagher, ALS Society of Canada
    Picture1

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

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

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

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

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

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Ali Var, Turkey

    Ali Var, Turkey

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

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Steve

    Steve

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Ian Roberts

    Ian Roberts

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Liam Dwyer, England

    Liam Dwyer, England

  • IMG_2658

    IMG_2658

  • Roy

    Roy
    roy

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Cath Muir

    Cath Muir
    Cath

  • Hollister

    Hollister
    hollister

  • Jean

    Jean
    jean

  • Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

    Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

  • David Bishop

    David Bishop

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

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

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

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

  • Bayley, Australia

    Bayley, Australia

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

    Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Peng Yi-Wen

    Peng Yi-Wen

  • Kirsty Gerlach, MND New Zealand, Diagnosed 2017

    Kirsty Gerlach, MND New Zealand, Diagnosed 2017

  • Dad

    Dad

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Ali Var, Turkey

    Ali Var, Turkey

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