ALS Patients & Families What is ALS? Amyotrophic Lateral Sclerosis

ALS Patients & Families
Paula Brockenbrough, CRT
Hattie Figgers, MSW
What is ALS?
Amyotrophic Lateral Sclerosis
• A progressive neurodegenerative disease that affects
nerve cells in the brain and spinal cord
• ALS is also known as Lou Gehrig’s disease, named
after New York Yankees baseball player Lou Gehrig
• Patients experience progressive loss of voluntary
movements and muscle control
• Patients lose the ability to speak, eat, move, and
• Life expectancy of a person with ALS averages 2-5
years from time of diagnosis
• ALS occurs throughout the world with no racial,
ethnic, or socioeconomic boundaries
Respiratory Therapist & ALS Clinic
• John Burke, retired from Army
• Served in World War II and
Korean War Officer
• Military Veterans are
approximately twice as likely to
develop ALS.
• Patients typically see multiple physicians prior to being diagnosed
with ALS
• From time of symptoms to diagnosis average almost 12 months in
some studies
• Up to 44% of time neurologists miss the ALS diagnosis despite a
diagnostic criteria established in 1994 (Cristini: JAAPA 2006)
• Timeliness of diagnosis critical in disease that is rapidly progressing
• Patient has a right to know the truth as soon as possible
• Gives the patient an opportunity to join clinical trials before
advanced disease rules them out
• The possibility that pharmacologic therapy may be more effective
• Patient and family can have time to cope with diagnosis and
subsequent issues: psychological, medical (mobility, breathing,
eating), and death
Initial Meeting after Diagnosis
• Straight forward and honest communication is
• Present information in language appropriate to
the patient
• Every step is explained (PMH, respiratory muscle
testing, recommendations, etc.)
• ALS clinic book with explanations of every
discipline at the clinic and contact information
Importance of Communication
• Introduce yourself to everyone in the room
• Sit on rolling chair in front of patient
• Maintain eye contact throughout
• Personalize the time you have with them
• Always ask patients open ended questions,
no yes/no questions
Thomas Smith, M.D.
Palliative Medicine
Professor of Oncology
Johns Hopkins University
Pat Coyne, MSN
Discussion of Death
• Willingness of medical team to discuss death openly with
patients and their families is of the upmost importance
• Open and honest discussion about death ensures
optimal care and alleviates patient and family concerns
• Patients need the comfort and information that the
willingness to talk gives them
• Asking what the patients are fearful of gives them an
opportunity to talk about the dying process
• Ask patients what is important to them; what do they
want to experience, see, do, etc.
Team Approach to Death
• We meet as a team to discuss what patients and families need
for the appointment
• The entire team is willing to meet with the patient and family as a
unit if that is what the patient wants
• Every team member encourages questions
• Never a “one time event” to talk about dying, discussion is fluid
• Critical to have a home care team of respiratory therapists,
nurses, PT/OT, and speech therapists who are also willing to
answer questions about care and death
• The clinic team is given the opportunity to say “goodbye” to the
The Role of Humor
• Humor has been shown to reduce anxiety
• Narrows the interpersonal gaps between patients
and the interdisciplinary team
• Communicates caring for the patient as a person
• Allows the patient to joke back, which can reveal
hidden agendas
• Allows for openings for further discourse of deeper
concerns (suicide)
• Patients and families see the clinic team as their
Strong Leadership
• Strong leadership of medical director helps with grief and
lessens compassion fatigue
• Time and process of death was expected and peaceful
• Medical and ethical decisions are discussed at length as a
• Communication with patient/family and team is ongoing and
Scott Vota, M.D.
Jason Wong, M.D.
Clinic Staff & Coping
• “Don't cry in empty rooms or stairwells- cry in public and let
patients and staff heal you and see you are human.” (Siegel:
JAMA 1994)
• Respect individuality in dealing with grief, every person grieves
• Clinic team being cognizant of how each staff member copes
• Pursuing healthy coping strategies
• Humor
• Working as a team to support each other
Dogs on Call
Harper’s Hope
Founded 1 year ago by Vic and Anne Harper
Funding has been able to provide:
A social worker to all neuromuscular patients- Hattie Figgers
Registered dietitian services increased from a half day to a full
Research to lead to new treatment strategies
PhD student to conduct research in collaboration with ALS
Educational training to physicians throughout the state regarding
the diagnosis and treatment of ALS
ALS Support Group
• Monthly ALS Support Group held at Glen Allen
• Support group is run by clinic staff
• Identified need for ALS Caregiver Support Group
• Support group is kept positive; plan fun activities
and outings