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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
Pediatric Health Care
  • Late 1800\'s
  • Early to mid 1900\'s
  • History of pediatrics
child health sub populations

18,989 Neonatal, 9538 Infant

24,519 ages 1-19 (~12,260 due to CCC)

National Vital Statistics ReportNatthews & MacDorman, 2008




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


US Census Bureau, 2008

Population of Children Under 18

Child Health Sub-populations
pediatric death
Pediatric Death
  • Death in developing countries
  • Death in the United States
disease dying trajectories
Disease/Dying Trajectories
  • Sudden, unexpected death
  • Death from potentially curable disease
  • Death from lethal congenital anomaly
  • Death from progressive conditions with intermittent crises
site of pediatric death
Site of Pediatric Death
  • Institutions
  • Intensive care units
death and dying disparities
Death and Dying Disparities
  • Child perspective
  • Family perspective
  • Sibling perspective
  • Grandparents perspective
  • Community perspective
  • Schools
philosophy and principles of hospice
Philosophy and Principles of Hospice
  • Hospice
    • Definition
    • History
hospice eligibility
Hospice Eligibility
  • Medicare Hospice Benefit
  • Medicaid Hospice Benefit
  • Not all hospice programs will care for children
  • Palliative/hospice care: changing the model
palliative care
Palliative Care

Curative Focus:

Disease-Specific Treatments

Palliative Focus:

Comfort / Supportive Treatments



principles of hospice palliative care for children
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
principles of hospice and palliative care cont1
Principles of Hospice and Palliative Care (cont.)
  • Education and support of child and family
  • Extends across illnesses and settings
  • Bereavement support
models of pediatric palliative and or hospice care
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

massachusetts pediatric palliative care network implementation of state funded program
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

development issues in pediatric palliative care
Development Issues in Pediatric Palliative Care
  • Comprehension
  • Communication
  • Fears
  • Development theories & tools
  • Child needs to protect family
stages of development
Stages of Development
  • Infancy
  • Toddlerhood
  • Preschool Age
  • School Age
  • Adolescence
barriers to quality care at the end of life
Barriers to Quality Care at the End of Life
  • Uncertainty of prognosis
  • Overtreatment
  • Limit of therapy
  • Insensitivities to cultural concerns
  • Communication breakdown
  • Other Limitations:



barriers to quality care at the end of life cont
Barriers to Quality Care at the End of Life (cont.)
  • Lack of adequate training of professionals
  • Delayed access to hospice/palliative care

—Death denial

nurse s role in pediatric palliative care
Nurse\'s Role in Pediatric Palliative Care
  • Anticipating
  • Preventing
  • Treating
  • Promoting
  • Advocacy
nurses role in pediatric palliative care cont
Nurses Role in Pediatric Palliative Care (cont.)
  • The importance of presence
  • Maintaining a realistic perspective
  • Nurses as the safety net
hope within pediatric palliative care
Hope within Pediatric Palliative Care
  • Meaning of hope
  • Hope vs. despair
  • Role of hope
model of quality of life
Model of Quality of Life
  • Physical


  • Psychological Well-Being
  • Social Well-Being
  • Spiritual




Functional Ability


Sleep & Rest









Pain Distress




Qualityof Life


Financial Burden

Caregiver Burden

Roles & Relationships

Affection/Sexual Function





Meaning of Pain



Adapted from Ferrell, et al. 1991

  • State of severe distress that threatens intactness of the person
  • Failure to respond to needs intensifies suffering
  • Depth of suffering

Ferrell & Coyle, 2008

neonatal suffering
Neonatal Suffering
  • Assess the family unit for suffering (including siblings)

AAP, 2000