tressia shaw, md pam roman, rn, chppn. objectives define palliative care and why it is important for...
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Pediatric Palliative CarePerinatal and Newborns
Tressia Shaw, MDPam Roman, RN, CHPPN
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What do you want to learn today??
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ObjectivesDefine palliative care and why it is important
for infants and children with life limiting conditions
Discuss examples of when palliative care could be useful for the child and family
Identify the role of the interdisciplinary team in palliative care
Discuss unique issues faced by the perinatal and newborn population
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Why is hospice and palliative care important in the infant population?
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Childhood Deaths
US: 53,287 deaths /yr 2007 statistics
29,138 in first year
>50% in infant (<1year) period
CDC 2007 data, published 2010
1 million seriously ill children with progressive medical conditions
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Leading Causes of Infant DeathCongenital malformations, deformations
and chromosomal abnormalities Disorders related to short gestation and
low birth weight Sudden infant death syndrome Newborn affected by maternal
complications of pregnancy Accidents (unintentional injuries)
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Trajectories of Childhood Death
Institute of Medicine
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What is palliative care?
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Palliative Care“Living” in the face of a life limiting conditionMay occur during curative treatment options
and at any point during the disease processInterdisciplinary family focused team
approach Psychosocial, spiritual, comprehensive pain and
symptom management, grief and bereavement support
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Palliative Care Can….Help define consistent
goals of care Support best quality of
life possibleAssist in sibling supportHelp navigate difficult
decisions and assist in advance care planning
By….Assessing
patient/family’s understanding
Treating distressing pain and other symptoms
Using interdisciplinary services
Reviewing goals of care and coordinating with the team
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Benefits of Palliative Care• Improved quality of life • Improved pain and symptom control • Increased satisfaction – patient and caregiver• Reduction in number of inpatient days• Increased likelihood of dying in preferred
location
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What is hospice?
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HospicePackage of services delivered by an
interdisciplinary team to a patient who has a life expectancy of 6-12 months
Also addresses symptom control, psychosocial care, spiritual care, and is family centered
Focuses on end of life
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Case DiscussionsCongenital CMVAnencephalyHypoxic Ischemic Event at birth with
uncertain prognosis
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Issues unique to Infants/ChildrenBirth and death may occur very close
togetherSurrogate decision makingMaintaining hopeUncertain/difficult prognosis for unusual
conditionsChildren are not supposed to dieEthical concerns
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Local ResourcesRyan House www.ryanhouse.orgHospice of the Valley Pediatric Home Team –
Palliative Care and Hospice www.hov.orgNew Song Center for Grieving Children
www.hov.org/new_song_center.aspxPhoenix Children’s Hospital Palliative Care
Program
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Additional ResourcesNational Hospice and Palliative Care
Organization www.nhpco.orgNational Network for Pediatric Palliative
Care http://www.network4pedspallcare.org/Children’s Hospice and Palliative Care
Coalition www.childrenshospice.orgGet Palliative Care
http://www.getpalliativecare.org/whatis/pediatric
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Resources