Pediatric Health Care

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Pediatric Health Care

• Late 1800's
• Early to mid 1900's
• History of pediatrics

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Child Health Sub-populations
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Pediatric Death

• Death in developing countries
• Death in the United States

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Disease/Dying Trajectories

• Sudden, unexpected death
• Death from potentially curable disease
• Death from lethal congenital anomaly
• Death from progressive conditions with
  intermittent crises

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Site of Pediatric Death

• Institutions
• Intensive care units

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Death and Dying Disparities

• Child perspective
• Family perspective
• Sibling perspective
• Grandparents perspective
• Community perspective
• Schools

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Philosophy and Principles of Hospice

• Hospice
• Definition
• History

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Hospice Eligibility

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

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Palliative Care
Curative Focus Disease-Specific Treatments
Palliative Focus Comfort / Supportive Treatments
Bereavement Support
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Philosophy and Goals of Hospice and Palliative
Care

• Philosophy of care
• Goals of care

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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

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Principles of Hospice and Palliative Care (cont.)

• Interdisciplinary team approach

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Principles of Hospice and Palliative Care (cont.)

• Education and support of child and family
• Extends across illnesses and settings
• Bereavement support

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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

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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

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Development Issues in Pediatric Palliative Care

• Comprehension
• Communication
• Fears
• Development theories tools
• Child needs to protect family

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Stages of Development

• Infancy
• Toddlerhood
• Preschool Age
• School Age
• Adolescence

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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

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Barriers to Quality Care at the End of Life
(cont.)

• Lack of adequate training of professionals
• Delayed access to hospice/palliative care
• Death denial

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Nurse's Role in Pediatric Palliative Care

• Anticipating
• Preventing
• Treating
• Promoting
• Advocacy

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Nurses Role in Pediatric Palliative Care (cont.)

• The importance of presence
• Maintaining a realistic perspective
• Nurses as the safety net

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Hope within Pediatric Palliative Care

• Meaning of hope
• Hope vs. despair
• Role of hope

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A Dose of Caring
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Model of Quality of Life

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

http//prc.coh.org
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Physical Functional Ability Strength/Fatigue Slee
p Rest Nausea Appetite Constipation Pain
Psychological Anxiety Depression Enjoyment/Leisure
Pain Distress Happiness Fear Cognition/Attention
Quality of 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
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To Comfort Always
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Suffering

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

Ferrell Coyle, 2008
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Neonatal Suffering

• Assess the family unit for suffering (including
  siblings)

AAP, 2000
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Healing Touch