Objectives

1. National Hospice and Palliative Care Organization’sPalliative Care Resource SeriesFinding Meaning and Hope While “My Body Entombs Me”: Music Therapy for Patients with ALSWritten 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 www.musictherapy.org)

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 www.who.int)

6. Definitions • Loss • 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 LifeReasons 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 LifeGoals 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. 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.