Transcript Palliative Care: Helping Pediatric Families Through Uncharted

PALLIATIVE CARE: HELPING
PEDIATRIC FAMILIES THROUGH
UNCHARTED TERRITORY
Kathy Perko, MS, PNP, CHPPN
Doernbecher Children’s Hospital
Portland, Oregon
WHAT IS PALLIATIVE CARE
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Relief of symptoms and conditions detracting
from a child’s (and family’s) quality of life
regardless of the impact of the child’s underlying
disease process
Control of pain and symptoms
Concern for psychological and spiritual issues
associated with life-threatening or terminal
illness
WHAT ISN’T PALLIATIVE CARE
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Intervention that may prolong the life (suffering)
of a child
Intervention that may substantially alter the
expected progression toward death
May be referred to as “Life Sustaining Medical
Treatment”
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Organ Transplantation, Ventilator Support, Dialysis,
Vasopressive Medications, Antibiotics,
Chemotherapy, Artificial Food/Nutrition
Parents
PCP
Quality of Life
Interventio
n
Function
Symptoms
Acute Process
ICU
Other
Providers
Interventio
n
Setting
Psychosocial
Interventio
n
Chronic Process
Home
Spirituality
Other
Family
Children with Life-Threatening Illness
Neonates
Young Adults
The Scope of Pediatric Palliative Care
IS PEDIATRIC CARE DIFFERENT THAN
ADULT PALLIATIVE CARE?
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Societal Norms
Too young to die
 Parents aren’t suppose to bury their kids
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Decision Makers
Decisions made in the “best interest” of their child
 Patient (child) involvement
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Developmental Consideration
Child’s understanding
 Siblings
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BMT AT OHSU DOERNBECHER
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2011
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34 transplants
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2012
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17 transplants
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Eight deaths
Five deaths
2013
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23 transplants (so far)
 Three deaths
And everyone gets a Palliative Care
Consult??
WHY A PALLIATIVE CARE CONSULT?
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Normalize experience
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Another layer of support
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Regardless of statistical outcome
Unbiased
Uncertain Outcome
CONTENT OF A CONSULT
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Tell me about “Elizabeth”
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Hospital experience
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Understanding of prognosis
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Understanding of the transplant/side effects
CONTENT OF A CONSULT
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Pain and symptom management
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Including the child
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On going support
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Bereavement if appropriate
RESEARCH STUDY
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Is the consult helpful?
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Interview
BMT team
 Bridges team
 Parents
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Results
Bridges
Pediatric Palliative Care
3181 SW Sam Jackson park Road
Portland, OR 97239
503.494.6201