Tressia Shaw, MD Pam Roman, RN, CHPPN. Objectives Define palliative care and why it is important for infants and children with life limiting conditions.

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Presentation transcript:

Tressia Shaw, MD Pam Roman, RN, CHPPN

Objectives Define 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

Childhood Deaths US: 53,287 deaths /yr 2007 statistics 29,138 in first year >50% in infant (<1year) period CDC 2007 data, published million seriously ill children with progressive medical conditions

Leading Causes of Infant Death Congenital 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)

Trajectories of Childhood Death Institute of Medicine

Palliative Care “Living” in the face of a life limiting condition May occur during curative treatment options and at any point during the disease process Interdisciplinary family focused team approach Psychosocial, spiritual, comprehensive pain and symptom management, grief and bereavement support

Palliative Care Can…. Help define consistent goals of care Support best quality of life possible Assist in sibling support Help 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

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

Hospice Package 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

Case Discussions Congenital CMV Anencephaly Hypoxic Ischemic Event at birth with uncertain prognosis

Issues unique to Infants/Children Birth and death may occur very close together Surrogate decision making Maintaining hope Uncertain/difficult prognosis for unusual conditions Children are not supposed to die Ethical concerns

Local Resources Ryan House Hospice of the Valley Pediatric Home Team – Palliative Care and Hospice New Song Center for Grieving Children Phoenix Children’s Hospital Palliative Care Program

Additional Resources National Hospice and Palliative Care Organization National Network for Pediatric Palliative Care Children’s Hospice and Palliative Care Coalition Get Palliative Care

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