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Palliative Care: Helping Pediatric Families Through Uncharted Territory

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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Palliative Care: Helping Pediatric Families Through Uncharted Territory

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  1. Palliative Care: Helping Pediatric Families Through Uncharted Territory Kathy Perko, MS, PNP, CHPPN Doernbecher Children’s Hospital Portland, Oregon

  2. What is Palliative Care • 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

  3. What ISN’T Palliative Care • 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” • Organ Transplantation, Ventilator Support, Dialysis, Vasopressive Medications, Antibiotics, Chemotherapy, Artificial Food/Nutrition

  4. Parents Other Providers PCP Quality of Life Function Symptoms Acute Process Chronic Process ICU Setting Home Psychosocial Spirituality Intervention Children with Life-Threatening Illness Intervention Intervention Other Family Neonates Young Adults The Scope of Pediatric Palliative Care

  5. Is Pediatric Care different than Adult Palliative Care? • Societal Norms • Too young to die • Parents aren’t suppose to bury their kids • Decision Makers • Decisions made in the “best interest” of their child • Patient (child) involvement • Developmental Consideration • Child’s understanding • Siblings

  6. BMT at OHSU Doernbecher • 2011 • 34 transplants • Eight deaths • 2012 • 17 transplants • Five deaths • 2013 • 23 transplants (so far) • Three deaths And everyone gets a Palliative Care Consult??

  7. Why a Palliative Care Consult? • Normalize experience • Regardless of statistical outcome • Another layer of support • Unbiased • Uncertain Outcome

  8. Content of a Consult • Tell me about “Elizabeth” • Hospital experience • Understanding of prognosis • Understanding of the transplant/side effects

  9. Content of a Consult • Pain and symptom management • Including the child • On going support • Bereavement if appropriate

  10. Research study • Is the consult helpful? • Interview • BMT team • Bridges team • Parents • Results

  11. Bridges Pediatric Palliative Care 3181 SW Sam Jackson park Road Portland, OR 97239 503.494.6201

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