1. National Hospice and Palliative Care Organization’s Palliative Care Resource Series Finding Meaning and Hope While “My Body Entombs Me”: Music Therapy for Patients with ALS Written by: Yelena Zatulovsky, LCAT, MA, MT-BC, CCLS, HPMT

2. Objectives Define Music Therapy
Understand Palliative Care and Focus for Music Therapists Supporting ALS
Identify Music Therapy Goals of Care
Describe Music Therapy Interventions
Discuss Clinical Use of Legacy for ALS Population

3. Understanding Music Therapy
Hearing is our first and last sense
Hearing is developed in the womb
Music is central to nearly every culture in the world
Music is multi-faceted – can have somatic, emotional, psychological, cognitive and spiritual effects
Music creates ritual, legacy, and a way to memorialize

4. What is Music Therapy?
Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program. American Music Therapy Association (Cited from

5. What is Palliative Care?
…An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. World health Organization (Cited from

6. Definitions Loss Dignity Hope Legacy
Being deprived of something of value and meaning
Dignity
The quality or state of being worthy, honored, or esteemed/respected
Hope
“…reflect what is important to the patient, what they are wishing for, and how they understand their illness” (Block, 2006)
Legacy
A gift by will
Something that happened in the past or that comes from someone in the past

7. Demoralization Syndrome (Kissane, 2001)
Characterized as “…incompetence through loss of meaning or purpose.”
Proposed Criteria:
Existential distress
Helplessness
Hopelessness
Isolation
Absence of drive
Lack of support

8. Music Therapy for Mr. H: Finding Meaning
MD referral for quality of life, pain and suffering
Assessment revealed Mr. H’s meaning, hope, and impact of illness – “I don’t believe in bad luck…”
Paramount for all sessions – active engagement and success within the limitations of disease progression (including proactive planning for decline trajectory)

9. Music Therapy for J: Reaffirming Life Reasons for Referral
Physical Needs
Altered breathing patterns
Declined gross- and fine-motor function
Psychosocial Needs
Spiritual distress – maintain faith – possibility for distraction
Impaired coping – anxiety, stress and depression related to illness – vicious cycle affecting perception of pain
Relationship conflicts – with self, staff, and family

10. Music Therapy for J: Reaffirming Life Goals Following Assessment
Immediate – to facilitate opportunities for comfort thereby decreasing anxiety
Enhancing relaxed breath patterns
To help J resolve inner conflicts
Accepting the “new” self and finding a new means for expression – in turn decreasing anxiety and stress
Coping with feelings of loss of self
To help the patient fulfill personal dreams
Leaving a legacy

11. Examples of Music Therapy Interventions for Patients with ALS
Prompting and lyric analysis
Lyrics can provide a stimulus to begin verbal processing, especially when a connection to the song already exists for the patient
Music-based life review and reminiscence
Each person with a relationship with music has a musical biography which is like the score to our movie – ex. J’s favorite song
Active music-making and improvisation
Finding ways to harness the patient’s abilities and skillsets are key for those with ALS – ex. Mr. H: tapping L foot – tambourine at L foot – engaging wife C as his ‘voice’ or strumming with index finger – iPad application with similar sound quality
Entrainment
Matching the patient somatically (breath patterns, heartbeat, movements), emotionally (vocal sounds, instrument playing), etc. in a manner that meets them where they are – ex. Mr. H and dissonance in the music to reflect the ‘darker’ parts of self
Iso-principle
Music that initially matches then is modified (in a chaining fashion) to increase comfort (physiologically, emotionally, psychologically…)
Songwriting and parody
Can be a safe context to express self and the creative process (including the challenging and frustrating aspects) may stimulate/correspond to the experience of physiologic change. Parody is the use of a pre-composed song in which the patient can fill-in specific lyrics that more closely align to their experience and/or the things they need ‘spoken.’ Parody is a wonderful tool for patients who are overwhelmed or anxious with a blank slate

12. The Why Behind the Clinical Use of Legacy
Captures a moment – often a successful one for the patient and/or a loving one between patient and spouse/children/friends/etc.
Safe form of expression – “I love you. Thank you, I forgive you, Forgive me, Goodbye“ in a safe context
Reinforces being never forgotten – a lasting memory
Provides joy in a time of sorrow, fear, and confusion
A hands-on medium for in-depth life-review – acknowledges purpose, hope, and meaning
Opportunity for education and way to determine patient’s and/or family’s wishes at time of death…or towards a good death
Tangible and accessible to any age demographic, culture, gender, faith, etc.
Limitless – needs only the creativity of a patient or clinician

13. Legacy Ideas for Patients with ALS
Music recordings
Songbooks and song biographies
Slideshows or other integrations of mixed mediums
Musical journeys
Hand molds
Letters and audio recording of letters/cards/notes

14. Our role is to help them find life through meaning.
Conclusion
“In the remaining weeks or months, the dying will be living and dying at the same time…”
T.M. West
Our role is to help them find life through meaning.