1. Module 2: Perinatal and Neonatal Palliative Care C C E E N N L L E E End-of-Life Nursing Education Consortium Pediatric Palliative Care C C E E N N L L E E

2. C C E E N N L L E E Perinatal and Neonatal Palliative Care Comprehensive care in a variety of settings Best Practice Models of perinatal and neonatal programs RTS Program

3. C C E E N N L L E E 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

4. C C E E N N L L E E Pediatric Palliative Care History of Perinatal and Neonatal Hospice and Palliative Care Testing and diagnostic technology advances Increased awareness Development of emerging pediatric hospice programs Research

5. C C E E N N L L E E Pediatric Palliative Care 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

6. C C E E N N L L E E Pediatric Palliative Care A Brief Life

7. C C E E N N L L E E 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

8. C C E E N N L L E E 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

9. C C E E N N L L E E Pediatric Palliative Care Types of Perinatal Loss Ectopic pregnancy Spontaneous abortion/miscarriage Stillbirth Neonatal death Life limiting conditions AWHONN, 2009

10. C C E E N N L L E E Pediatric Palliative Care 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

11. C C E E N N L L E E Pediatric Palliative Care A Very Empty Nest

12. C C E E N N L L E E 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

13. C C E E N N L L E E 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

14. C C E E N N L L E E Pediatric Palliative Care Strategies to Overcome Barriers to Perinatal Palliative Care Staff training Access Environment of care Parent education Model programs

15. C C E E N N L L E E Pediatric Palliative Care Perinatal Communication: What Parents Want Knowledge Preparation Anticipation Continuity Support Respect

16. C C E E N N L L E E Pediatric Palliative Care Planning for Perinatal Palliative Care Create enviroment Open dialogue Education

17. C C E E N N L L E E Pediatric Palliative Care Support During the Pregnancy Special accommodations Facilitating attachment Naming the fetus Spiritual offering

18. C C E E N N L L E E Pediatric Palliative Care Support During the Pregnancy (cont) Presence Communication Identify resources to help family members cope during pregnancy

19. C C E E N N L L E E Pediatric Palliative Care Intrapartum Care Advance care planning: Birth Plan Comfort care Interdisciplinary team meeting

20. C C E E N N L L E E Pediatric Palliative Care After the Infant’s Death Utilization of Birthing Plan Diagnostic testing Memory-making Lactation

21. C C E E N N L L E E Pediatric Palliative Care Unique Characteristics of Perinatal Bereavement Mourning Problematic social emotions Isolation and abandonment Disenfranchised grief

22. C C E E N N L L E E Pediatric Palliative Care Unique Characteristics of Perinatal Bereavement (cont.) Attachment syndrome Trauma Subsequent pregnancies Death of multiples

23. C C E E N N L L E E Pediatric Palliative Care 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

24. C C E E N N L L E E Pediatric Palliative Care Little Sister

25. C C E E N N L L E E Pediatric Palliative Care Communication: What Parents Want In The NICU Inclusion Concrete evidence Pacing Respect Privacy McHaffie et al., 2001

26. C C E E N N L L E E 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

27. C C E E N N L L E E Pediatric Palliative Care Ethical Issues in Neonatal Palliative Care Decision-making Families demand “inappropriate care” “Treatment Train”

28. C C E E N N L L E E Pediatric Palliative Care Ethical Issues in Neonatal Palliative Care (cont.) Futility Withdrawing/withholding treatment AAP statement on “Resuscitation”

29. C C E E N N L L E E Pediatric Palliative Care Resolving Ethical Dilemmas Resolving conflicts Communication Education Ethical consultation

30. C C E E N N L L E E Pediatric Palliative Care Location of Death for the Neonate Hospital Home Encourage parents to “parent’ their infant Catlin & Carter, 2002

31. C C E E N N L L E E Pediatric Palliative Care Withdrawal of Mechanical Ventilation: Preparation Orders Time Education Contingency plans Autopsy and organ/tissue donation Medication Process Catlin & Carter, 2002; Sine et al., 2001

32. C C E E N N L L E E Pediatric Palliative Care Withdrawal of Mechanical Ventilation: Process Environment Communication Time Catlin & Carter, 2002; Munson, 2007

33. C C E E N N L L E E Pediatric Palliative Care “Rights of Parents” Rituals Catlin & Carter, 2002; Munson, 2007

34. C C E E N N L L E E Pediatric Palliative Care 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

35. C C E E N N L L E E Pediatric Palliative Care Continued Nutrition & Hydration Withdrawing vs. withholding nutrition Carter & Leuthner, 2003

36. C C E E N N L L E E Pediatric Palliative Care Unique Features of Neonatal Palliative Care Extremely long hospitalizations Parent medical record

37. C C E E N N L L E E Pediatric Palliative Care Nursing Experience with the Dying Infant Death as a failure Stress Coping skills/emotional protection Empowered to support Kain, 2006, 2009

38. C C E E N N L L E E Pediatric Palliative Care The End of the Day

39. C C E E N N L L E E Pediatric Palliative Care The Nurse’s Experience (cont.) Moral distress Conscientious objection to orders Catlin et al., 2008

40. C C E E N N L L E E Pediatric Palliative Care Oh, My Child