Pediatric Palliative Care Curriculum

Blaine Pitts, MDLeslie Meadows, MA, MT-BC

Barb Greenwood, MA, ATR-BC

What affects a child’s coping and understanding?

Developmental ageFamily dynamics

Fear of the unknown/knownIsolation

Support systemCommunication ability and style

Amount of choice availableCulture

What is Expressive Therapy ?

A therapeutic process designed to act as a catalyst,giving an individual the ability to communicate

wants, needs and feelings.

Music Therapy, Art Therapy, Drama Therapy, Dance Therapy, Poetry Therapy

Different from performance or education

Process oriented vs. product oriented

Expressive Therapy Goals in Pediatric Healthcare

Decrease anxiety and fear Improve coping through choice and control Alleviate pain Increase emotional expression Decrease feelings of isolation Improve socialization skills Strengthen and improve communication Improve family dynamics surrounding

treatment Experience feeling of community Provide comfort and a legacy at the end of

life

Music Therapyis 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 (AMTA).

Music Therapy Interventions

Improvisation Therapeutic Singing Song Choice Instrument Playing Composition/Song

Writing Guided Imagery and

Music Music Listening Lyric Analysis

GROUP

vs.

INDIVIDUAL

Case Study

Dialysis Patient 16 years old Complex family

dynamics 11 sessions

Case Study #1 16 y/o Hispanic AA M w/ hx of b/l renal

dysplasia s/p cadaver renal transplant 05 w/ acute rejection 08 related to non-compliance

Nephrology made CSB referral RN visits twice a day for medication

administration Palliative Care consult for family support and

care coordination6 inpt admissions in past 2 years prior to PC

Non-compliant with diet and fluid requirement Recently needed transplant nephrectomy Currently receives dialysis

Case Study #1 Soc/Fam Hx:

Lives with mother, younger twin sisters, older half-sister and her toddler

His mother has chronic back pain from a MVAYounger sister was raped and since that time his

mother has not workedHis mother is the main caregiver for his sister’s

toddlerBoth younger twin sisters have ADHDMany financial difficulties related to pt’s illness

Case Study #1 Soc/Fam Hx:

Talks w/ biologic father but is minimally involved secondary to being accused of younger sister’s rape

CSB referral for medical neglect but also concerns over corporal punishment threats

Mother is close to MGM who lives in Puerto Rico○ Pt is also close with MGM

Usually attends dialysis alone

Case Study #1 Dev/School Hx:

Is developmentally delayed to level of 7 y/oAttends 9th grade w/ special ed (IEP)Frequent school absences secondary to

illness and dialysisStill having incontinence despite neg

medical work-up○ Frustrating for his mother○ Poor personal hygiene

Pressured speech & voice inappropriate for age

Difficult w/ attention span

Case Study #1

How can music therapy bebeneficial with this patientand family?

Therapeutic Songwriting

Future Goals for MT

Explore relevant cultural and spiritual music

Continue to address academic issues through music interventions

Develop adapted music skills Encourage and support greater depth of

emotional expression Improve speech pacing and vocal affect

What is Art Therapy ?

Art Therapy is a mental health profession that uses the creative process of art making to improve and enhance the physical, mental and emotional well-being of individuals of all ages. It is based on the belief that the creative process involved in artistic self-expression helps people to resolve conflicts and problems, develop interpersonal skills, manage behavior, reduce stress, increase self-esteem and self-awareness, and achieve insight. (AATA)

Expressive Therapy Continuum

Sensory-Kinetic Control-Fluid

Creative Process Symbolic imagery and

metaphor

Cognitive restructuring

Increases discussion

Non threatening way to promote spontaneity

Self-satisfaction and autonomy

Safe container

Archive the story

Helps find solutions

Case Study

Oncology Patient

7 years old 2 siblings, 2

parents 12 sessions

Case Study #2 7 y/o male w/ Stage IV Wilm’s tumor w/

pulmonary mets (dx 1/07) s/p L nephrectomy s/p abdominal radiation & chemo

Recent RLL pulm recurrence s/p resection & radiation (6/10)

Admitted for HDCT w/ auto stem cell rescue (10/10)

No significant prior medical history

Case Study #2 Palliative care consult for pain

management Transplant-associated mucositis

managed with Dilaudid PCA (had AE w/ morphine)

Had psychosis/agitation associated with steroids

Bacteremia x 2 episodes Otherwise did well & was D/C on

Oxycodone prn

Case Study #2 On Day +55 s/p stem cell rescue he

presented to clinic w/ dyspnea w/ associated chest pain & emesis intermittently

Large pericardial effusion found w/ diagnosis of thrombotic microangiopathy (TMA)

PICU transfer for further managementPericardial drain placedHypertension difficult to manage

Case Study #2 His TMA was managed w/

plasmapheresis, dialysis, Rituximab, and steroids

Palliative care was consulted for pain management Managed with scheduled/intermittent DilaudidPain was in R leg, b/l arms, and abdomen

with associated anorexiaAbdominal pain progressively became his

only source of pain ○ Not responsive to opioids ○ No clear etiology

Case Study #2 During his course, he became more

non-compliant with staffMedication administration, obtaining vital

signs, procedures, and therapies (OT/PT) Psychosocial Hx:

Lives w/ his parents who are not marriedHas 2 sistersParents would occasionally enable

behaviors

Case Study #2

How can art therapy bebeneficial with thispatient and family?

The Expressive Therapy Center

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