A Primer for Physicians and Allied Health Professionals
This program helps physicians and allied health professionals deliver an ALS/MND diagnosis with more confidence and less harm to patients and caregivers. It was built by clinicians with direct experience delivering ALS/MND diagnoses, and includes video training, downloadable guides and the A-LS-PIKES communication protocol.
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-LS-PIKES technique in clinical practice to improve confidence and comfort in delivering news
Resources
Download the materials below to use the program, share it with your team or support participants after the training.
How to Break the News – Slides (PDF) — Full training slide deck
Evaluation Form (PDF) — For participants to complete after the training
Invitation (PDF) — A sample invitation to promote the program to your team
Participant Handout (PDF) — A summary guide for participants
Speaker Guide (PDF) — Facilitator notes for presenting the training
How to Break the News in ALS/MND: Practical Guidelines from Experts — Journal article
Resources available in French
Videos
Watch 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.
Full Recording of the How to Break the News in ALS/MND Program
Watch the full faculty-led recording of the How to Break the News in ALS/MND program.
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.
“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.
Mindfulness Exercise
This exercise builds on the previous “know thyself” exercise and focuses 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.
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.
When the Emotions Become Overwhelming
Dr. Kavanaugh provides key tips to follow when emotions become overwhelming.
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.
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.
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.
A-LS-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.
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.
A Caregiver’s Experience Receiving the Diagnosis
A caregiver describes what it was like to be in the room when the diagnosis was delivered.
A Caregiver’s Perspective on How Challenging Delivering a Diagnosis Must Be for Clinicians
The same caregiver reflects on the difficulty of the clinician’s role in delivering this news.