Module 2:Perinatal and Neonatal Palliative Care
CCEENNLLEEEnd-of-Life Nursing Education Consortium
Pediatric Palliative Care
CCEENNLLEE Pediatric Palliative Care
CCEENNLLEE Pediatric Palliative Care
Perinatal and Neonatal Palliative Care
Comprehensive care in a variety of settings
Best Practice Models of perinatal and neonatal programs
RTS Program
CCEENNLLEE Pediatric Palliative Care
History of Neonatal Intensive Care
1950’s- 1960’s: NICU
development Paternalism in decision making 1973: Duff & Campbell 1982: Influence of Baby Doe
Case
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History of Perinatal and Neonatal Hospice and Palliative Care
Testing and diagnostic technology advances
Increased awareness Development of emerging
pediatric hospice programs Research
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Standards of Professional Practice
NANN - National Association of Neonatal Nurses
AAP - American Academy of Pediatrics NHPCO – National Hospice and Palliative
Care Organization AWHONN – Association of Women’s
Health Obstetric and Neonatal Nurses
CCEENNLLEE Pediatric Palliative CareA Brief Life
CCEENNLLEE Pediatric Palliative Care
Epidemiology
Each year nearly 900,000 families are affected by birth tragedies
Neonatal mortality rate 4.2 per 1000 live births
Infant mortality rate 6.42 per 1000 live births
Congenital malformations account for 20% of deaths
Field & Behrman, 2003; Hoyert et al., 2006, US Dept. of HHS, 2011
CCEENNLLEE Pediatric Palliative Care
Perinatal Hospice and Palliative Care
The provision of care for a family when a potentially life limiting condition of the fetus is identified in utero.
Duality issue Goals Interdisciplinary team approach Transition
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Types of Perinatal Loss
Ectopic pregnancy Spontaneous
abortion/miscarriage Stillbirth Neonatal death Life limiting conditions
AWHONN, 2009
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Stakeholders in Perinatal Palliative Care
Baby, Parents, Siblings, Extended Family
Nurses Geneticists/Genetic
counselors Insurers Perinatologists Pregnancy counselors Sonographers Child birth educators Midwives
Obstetricians Labor and delivery wards Pediatric pharmacists Neonatal nurse
practitioners Neonatologists Pediatricians Home health agencies Faith community Funeral directors Grief counselors
CCEENNLLEE Pediatric Palliative CareA Very Empty Nest
CCEENNLLEE Pediatric Palliative Care
Implementing Perinatal Palliative Care Strategies
Establish an interdisciplinary team of inpatient and community based members
Develop a process supported by education, policies and procedures
Continuity and support services Community
CCEENNLLEE Pediatric Palliative Care
Barriers to Perinatal Palliative Care
Barriers in the environment of care Feelings and beliefs of
staff/providers Family expectations Society expectations Issue of hope Financial/regulatory barriers
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Strategies to Overcome Barriers to Perinatal Palliative Care
Staff training Access Environment of care Parent education Model programs
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Perinatal Communication: What Parents Want
Knowledge Preparation Anticipation Continuity Support Respect
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Planning for Perinatal Palliative Care
Create enviroment Open dialogue Education
CCEENNLLEE Pediatric Palliative Care
Support During the Pregnancy
Special accommodations Facilitating attachment Naming the fetus Spiritual offering
CCEENNLLEE Pediatric Palliative Care
Support During the Pregnancy (cont)
Presence Communication Identify resources to help family
members cope during pregnancy
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Intrapartum Care
Advance care planning: Birth Plan
Comfort care Interdisciplinary team meeting
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After the Infant’s Death
Utilization of Birthing Plan Diagnostic testing Memory-making Lactation
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Unique Characteristics of Perinatal Bereavement
Mourning Problematic social emotions Isolation and abandonment Disenfranchised grief
CCEENNLLEE Pediatric Palliative Care
Unique Characteristics of Perinatal Bereavement (cont.)
Attachment syndrome Trauma Subsequent pregnancies Death of multiples
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Neonatal Palliative Care
Newborns who should receive palliative care:
– Newborns at threshold of viability
– Newborns with complex or multiple congenital anomalies
– Newborns not responding to intensive care intervention
CCEENNLLEE Pediatric Palliative CareLittle Sister
CCEENNLLEE Pediatric Palliative Care
Communication: What Parents Want In The NICU
Inclusion Concrete evidence Pacing Respect Privacy
McHaffie et al., 2001
CCEENNLLEE Pediatric Palliative Care
Communication Strategies in the NICU
Convey empathy Speak directly Focus on compassion and prevention of
suffering Wait quietly Review the goals Guide parents through the process Address spirituality
Catlin & Carter, 2002
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Ethical Issues in Neonatal Palliative Care
Decision-making Families demand “inappropriate
care” “Treatment Train”
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Ethical Issues in Neonatal Palliative Care (cont.)
Futility Withdrawing/withholding treatment AAP statement on “Resuscitation”
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Resolving Ethical Dilemmas
Resolving conflicts Communication Education Ethical consultation
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Location of Death for the Neonate
Hospital Home Encourage parents to “parent’
their infant
Catlin & Carter, 2002
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Withdrawal of Mechanical Ventilation: Preparation
Orders Time Education Contingency plans Autopsy and organ/tissue donation Medication Process Catlin & Carter, 2002; Sine et al., 2001
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Withdrawal of Mechanical Ventilation: Process
Environment Communication Time
Catlin & Carter, 2002; Munson, 2007
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“Rights of Parents”
Rituals
Catlin & Carter, 2002; Munson, 2007
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When Dying Is Prolonged: Caring for the Neonate Beyond the First Few Hours
What to do What to say Preparing family for
alternatives
Catlin & Carter, 2002
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Continued Nutrition & Hydration
Withdrawing vs. withholding nutrition
Carter & Leuthner, 2003
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Unique Features of Neonatal Palliative Care
Extremely long hospitalizations Parent medical record
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Nursing Experience with the Dying Infant
Death as a failure Stress Coping skills/emotional protection Empowered to support
Kain, 2006, 2009
CCEENNLLEE Pediatric Palliative CareThe End of the Day
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The Nurse’s Experience (cont.)
Moral distress Conscientious objection to
orders
Catlin et al., 2008
CCEENNLLEE Pediatric Palliative CareOh, My Child