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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 - PowerPoint PPT Presentation
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Module 1:Introduction to Pediatric Palliative Care
CENLEEnd-of-Life Nursing Education Consortium
Pediatric Palliative Care
CENLE Pediatric Palliative Care
CCEENNLLEE Pediatric Palliative Care
Pediatric Health Care
Late 1800's
Early to mid 1900's
History of pediatrics
Child Health Sub-populations
Population of Children Under 18
Children with Special Health
Care Needs
Children with Complex
Chronic Conditions
ChildDeath
s
10,743,211 – 16,528,017Bethell et al., 2008
82,640,086US Census Bureau, 2008
644,593 – 1,652,802Bramlett et al., 2008
18,989 Neonatal, 9538 Infant24,519 ages 1-19 (~12,260 due to CCC)National Vital Statistics ReportNatthews & MacDorman, 2008
CCEENNLLEE Pediatric Palliative Care
Pediatric Death
Death in developing countries Death in the United States
CCEENNLLEE Pediatric Palliative Care
Disease/Dying Trajectories
Sudden, unexpected death Death from potentially curable
disease Death from lethal congenital anomaly Death from progressive conditions
with intermittent crises
CCEENNLLEE Pediatric Palliative Care
Site of Pediatric Death
Institutions Intensive care units
CCEENNLLEE Pediatric Palliative Care
Death and Dying Disparities
Child perspective Family perspective Sibling perspective
Grandparents perspective
Community perspective
Schools
CCEENNLLEE Pediatric Palliative Care
Philosophy and Principles of Hospice
Hospice Definition History
CCEENNLLEE Pediatric Palliative Care
Hospice Eligibility
Medicare Hospice Benefit Medicaid Hospice Benefit Not all hospice programs will
care for children Palliative/hospice care: changing
the model
CCEENNLLEE Pediatric Palliative Care
Palliative Care
Curative Focus:Curative Focus:Disease-Specific Disease-Specific TreatmentsTreatments
Palliative Focus:Palliative Focus:Comfort / Supportive Comfort / Supportive TreatmentsTreatments
BereavementBereavementSupportSupport
CCEENNLLEE Pediatric Palliative Care
Philosophy and Goals of Hospice and Palliative Care
Philosophy of care
Goals of care
CCEENNLLEE Pediatric Palliative Care
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
CCEENNLLEE Pediatric Palliative Care
Principles of Hospice and Palliative Care (cont.)
Interdisciplinary team approach
CCEENNLLEE Pediatric Palliative Care
Principles of Hospice and Palliative Care (cont.)
Education and support of child and family
Extends across illnesses and settings
Bereavement support
CCEENNLLEE Pediatric Palliative 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
CCEENNLLEE Pediatric Palliative Care
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
CCEENNLLEE Pediatric Palliative Care
Development Issues in Pediatric Palliative Care
Comprehension Communication Fears Development theories & tools Child needs to protect family
CCEENNLLEE Pediatric Palliative Care
Stages of Development
Infancy Toddlerhood Preschool Age School Age Adolescence
CCEENNLLEE Pediatric Palliative Care
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
CCEENNLLEE Pediatric Palliative Care
Barriers to Quality Care at the End of Life (cont.)
Lack of adequate training of professionals
Delayed access to hospice/palliative care
—Death denial
CCEENNLLEE Pediatric Palliative Care
Nurse's Role in Pediatric Palliative Care
Anticipating Preventing
Treating
Promoting
Advocacy
CCEENNLLEE Pediatric Palliative Care
Nurses Role in Pediatric Palliative Care (cont.)
The importance of presence Maintaining a realistic
perspective
Nurses as the safety net
CCEENNLLEE Pediatric Palliative Care
Hope within Pediatric Palliative Care
Meaning of hope Hope vs. despair Role of hope
CCEENNLLEE Pediatric Palliative Care
A Dose of Caring
CCEENNLLEE Pediatric Palliative Care
Model of Quality of Life
Physical
Well-Being Psychological
Well-Being Social Well-Being Spiritual
Well-Beinghttp://prc.coh.org
PhysicalFunctional AbilityStrength/Fatigue
Sleep & RestNauseaAppetite
ConstipationPain
PsychologicalAnxiety
DepressionEnjoyment/Leisure
Pain DistressHappiness
FearCognition/Attention
Quality of Life
SocialFinancial BurdenCaregiver Burden
Roles & RelationshipsAffection/Sexual Function
Appearance
SpiritualHope
SufferingMeaning of Pain
ReligiosityTranscendence
Adapted from Ferrell, et al. 1991
CCEENNLLEE Pediatric Palliative Care
To Comfort Always
CCEENNLLEE Pediatric Palliative Care
Suffering State of severe distress that
threatens intactness of the person
Failure to respond to needs intensifies suffering
Depth of suffering
Ferrell & Coyle, 2008
CCEENNLLEE Pediatric Palliative Care
Neonatal Suffering
Assess the family unit for suffering (including siblings)
AAP, 2000
CCEENNLLEE Pediatric Palliative Care
Healing Touch