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Pediatric Health Care

Pediatric Health Care. Late 1800's Early to mid 1900's History of pediatrics. 18,989 Neonatal, 9538 Infant 24,519 ages 1-19 (~12,260 due to CCC) National Vital Statistics Report Natthews & MacDorman, 2008. Child Deaths. Children with Complex Chronic Conditions. 644,593 – 1,652,802

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Pediatric Health Care

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  1. Pediatric Health Care • Late 1800's • Early to mid 1900's • History of pediatrics

  2. 18,989 Neonatal, 9538 Infant 24,519 ages 1-19 (~12,260 due to CCC) National Vital Statistics ReportNatthews & MacDorman, 2008 Child Deaths Children with Complex Chronic Conditions 644,593 – 1,652,802 Bramlett et al., 2008 10,743,211 – 16,528,017 Bethell et al., 2008 Children with Special Health Care Needs 82,640,086 US Census Bureau, 2008 Population of Children Under 18 Child Health Sub-populations

  3. Pediatric Death • Death in developing countries • Death in the United States

  4. Disease/Dying Trajectories • Sudden, unexpected death • Death from potentially curable disease • Death from lethal congenital anomaly • Death from progressive conditions with intermittent crises

  5. Site of Pediatric Death • Institutions • Intensive care units

  6. Death and Dying Disparities • Child perspective • Family perspective • Sibling perspective • Grandparents perspective • Community perspective • Schools

  7. Philosophy and Principles of Hospice • Hospice • Definition • History

  8. Hospice Eligibility • Medicare Hospice Benefit • Medicaid Hospice Benefit • Not all hospice programs will care for children • Palliative/hospice care: changing the model

  9. Palliative Care Curative Focus: Disease-Specific Treatments Palliative Focus: Comfort / Supportive Treatments Bereavement Support

  10. Philosophy and Goals of Hospice and Palliative Care • Philosophy of care • Goals of care

  11. Principles of Hospice & Palliative Care for Children • Precepts of Palliative Care for Children • Child and family as unit of care • Adolescents and young adults have distinctive needs • Attention to physical, psychological, social and spiritual needs

  12. Principles of Hospice and Palliative Care (cont.) • Interdisciplinary team approach

  13. Principles of Hospice and Palliative Care (cont.) • Education and support of child and family • Extends across illnesses and settings • Bereavement support

  14. Models of Pediatric Palliative and/or Hospice Care • Hospital-based programs • Free-standing facility • Hospice-based programs • Community agency or long-term care facility Friebert, 2009

  15. Massachusetts Pediatric Palliative Care Network: Implementation of State-Funded Program • Consult services • Decreased cost • 100% of deaths occurred at families requested location • Median length of stay on service = 233 days Bona et al., 2011

  16. Development Issues in Pediatric Palliative Care • Comprehension • Communication • Fears • Development theories & tools • Child needs to protect family

  17. Stages of Development • Infancy • Toddlerhood • Preschool Age • School Age • Adolescence

  18. Barriers to Quality Care at the End of Life • Uncertainty of prognosis • Overtreatment • Limit of therapy • Insensitivities to cultural concerns • Communication breakdown • Other Limitations: -Financial -Geographical

  19. Barriers to Quality Care at the End of Life (cont.) • Lack of adequate training of professionals • Delayed access to hospice/palliative care —Death denial

  20. Nurse's Role in Pediatric Palliative Care • Anticipating • Preventing • Treating • Promoting • Advocacy

  21. Nurses Role in Pediatric Palliative Care (cont.) • The importance of presence • Maintaining a realistic perspective • Nurses as the safety net

  22. Hope within Pediatric Palliative Care • Meaning of hope • Hope vs. despair • Role of hope

  23. A Dose of Caring

  24. Model of Quality of Life • Physical Well-Being • Psychological Well-Being • Social Well-Being • Spiritual Well-Being http://prc.coh.org

  25. Physical Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Pain Psychological Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Qualityof Life Social Financial Burden Caregiver Burden Roles & Relationships Affection/Sexual Function Appearance Spiritual Hope Suffering Meaning of Pain Religiosity Transcendence Adapted from Ferrell, et al. 1991

  26. To Comfort Always

  27. Suffering • State of severe distress that threatens intactness of the person • Failure to respond to needs intensifies suffering • Depth of suffering Ferrell & Coyle, 2008

  28. Neonatal Suffering • Assess the family unit for suffering (including siblings) AAP, 2000

  29. Healing Touch

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