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Pediatric Palliative Care Overview

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A talk I gave for the University of Kansas Grand Rounds for Pediatrics.

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Pediatric Palliative Care Overview

  1. 1. PEDIATRIC PALLIATIVE CARE: WHY AN INTERNIST NEEDS TO SEE PEDIATRIC PATIENTS Christian Sinclair, MD, FAAHPM – KC Hospice
  2. 2. Adult Pediatrics Palliative Care
  3. 3. Hospital • Consult • Designated beds Hospice-based • Dedicated team • Adult team w/ exp Pediatric Hospice • Independent • Dedicated team
  4. 4. Curative Care/ Disease Modifying Palliative Care
  5. 5. Patient Family Medical System
  6. 6. Patient Family Medical System
  7. 7. Life Progressive Inevitable Irreversible threatening conditions premature but non- + curative – curative death progressive potential potential Neuro- Cystic Cerebral Cancers degenerative Fibrosis palsy Batten Genetic Organ Failure San Filippo Disease disorders
  8. 8. Life Progressive Inevitable Irreversible threatening conditions – premature but non- + curative curative death progressive potential potential Advanced Cancers ALS Lung Stroke Cancer Pancreatic COPD Sepsis Dementia Cancer CHF
  9. 9. Chronic Children who complex die conditions Pediatric Palliative Care Life- Life-limiting threatening
  10. 10. Peds Deaths Peds Hospice
  11. 11. All Children All Children All Infants All Infants 1-19yo 1-19yo w/CCC w/CCC • Accidents • Malignancy • Congenital • Cardiac (32%) • Assault (43%) • LBW • Congenital • Malignancy • Neuromuscular • SIDS (26%) • Suicide (23%) • Birth • Pulmonary • Congenital • Cardiac (17%) complications (17%) • Chromosomal • Injury • Neuromuscular (14%) • Cardiac • Neurologic
  12. 12. Percentage of Deaths at Home Age Group 1989 2003 0-19 years 10% 18% Infants 5% 7% 1-9 years 18% 31% 10-19 years 18% 32%
  13. 13. Contacts  University of Kansas Medical Center Kathy Davis, PhD Karin Porter-Williamson, MD  Kansas City Hospice / Carousel ChristianSinclair, MD, FAAHPM Patty Poore, RN, CHPN
  14. 14. 1 • I am seriously ill 2 • I am seriously ill but will get better 3 • I am always ill but will get better 4 • I am always ill but will not get better 5 • I am dying
  15. 15. 0-2 years • Awareness of separation, tension • Provide physical comfort, familiar people and objects 2-6 years • Death as reversible, sleeping, magical thinking • Concrete information, dispel misconceptions 7-12 years • Death as final, personal, unpredictable • May want graphic information • Inquire for fears, encourage access to peers 12+ years • Death as final, universal, but distanced • May address unrealized plans, explanations • Allow for emotions and privacy, support independence
  16. 16. Privacy, Involve others, Sit Setting down, Attentive, Calm, Listening, Ava ilable Perception Before you tell, ask Invitation Respect the patient’s right to know or refuse information Knowledge Use lay language, avoid technical terms, give in small amounts Empathy Listen for and identify emotions Strategy Make clear expectations about the and Summary plan
  17. 17. Assess Symptom Assess Treat Side Effects Assess Efficacy
  18. 18. Opioid Myths Respiratory depression Constipation Addiction
  19. 19. Key CHiPPS Recommendations  Sole admission criteria to pediatric palliative care = pt not expected to survive to adulthood  Interdisciplinary approaches address the whole person and family  Provisions of support for staff who care for children with life- limiting illness  Post-death care needs to be integrated with health care design and funding  Financial incentives for pediatric palliative care must be developed  Support for pediatric assent and the mature minor doctrine  Community education regarding pediatric palliative care and DNR orders  http://bit.ly/DVtzB
  20. 20. Adult Pediatrics Palliative Care
  21. 21. Key Reading • Friebert S. NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, April 2009. • When Children Die: Improving Palliative and End- of-Life Care for Children and Their Families. 2003 Board on Health Sciences Policy. • Oxford Textbook of Palliative Care for Children • The Hospice and Palliative Medicine Approach to Caring for Pediatric Patients – UNIPAC series - AAHPM
  22. 22. Online Resources for Pediatric Palliative Care  Fast Facts: http://bit.ly/cj9UJ  NHPCO Pediatric Palliative Care Standards: http://bit.ly/4qpV9  NHPCO Pediatrics Facts & Figures: http://bit.ly/Dj7oX  Pallimed: http://www.pallimed.org

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