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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

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


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

Bereavement

Support


Philosophy and goals of hospice and palliative care
Philosophy and Goals of Hospice and Palliative Care

  • Philosophy of care

  • Goals of care


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 cont
Principles of Hospice and Palliative Care (cont.)

  • Interdisciplinary team approach


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 Implementation of State-Funded Program

  • Comprehension

  • Communication

  • Fears

  • Development theories & tools

  • Child needs to protect family


Stages of development
Stages of Development Implementation of State-Funded Program

  • Infancy

  • Toddlerhood

  • Preschool Age

  • School Age

  • Adolescence


Barriers to quality care at the end of life
Barriers to Quality Care Implementation of State-Funded Programat the End of Life

  • Uncertainty of prognosis

  • Overtreatment

  • Limit of therapy

  • Insensitivities to cultural concerns

  • Communication breakdown

  • Other Limitations:

    -Financial

    -Geographical


Barriers to quality care at the end of life cont
Barriers to Quality Care Implementation of State-Funded Programat 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 Implementation of State-Funded Program

  • Anticipating

  • Preventing

  • Treating

  • Promoting

  • Advocacy


Nurses role in pediatric palliative care cont
Nurses Role in Pediatric Palliative Care (cont.) Implementation of State-Funded Program

  • The importance of presence

  • Maintaining a realistic perspective

  • Nurses as the safety net


Hope within pediatric palliative care
Hope within Pediatric Palliative Care Implementation of State-Funded Program

  • Meaning of hope

  • Hope vs. despair

  • Role of hope


A Dose of Caring Implementation of State-Funded Program


Model of quality of life
Model of Quality of Life Implementation of State-Funded Program

  • Physical

    Well-Being

  • Psychological Well-Being

  • Social Well-Being

  • Spiritual

    Well-Being

http://prc.coh.org


Physical Implementation of State-Funded Program

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


To Comfort Always Implementation of State-Funded Program


Suffering
Suffering Implementation of State-Funded Program

  • 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 Implementation of State-Funded Program

  • Assess the family unit for suffering (including siblings)

AAP, 2000


Healing Touch Implementation of State-Funded Program


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