Perinatal and Neonatal Palliative Care

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

3. 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. History of Perinatal and Neonatal Hospice and Palliative Care • Testing and diagnostic technology advances • Increased awareness • Development of emerging pediatric hospice programs • Research

5. 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. A Brief Life

7. 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. 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. Types of Perinatal Loss • Ectopic pregnancy • Spontaneous abortion/miscarriage • Stillbirth • Neonatal death • Life limiting conditions AWHONN, 2009

10. 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 Stakeholders in Perinatal Palliative Care

11. A Very Empty Nest

12. 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. 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. Strategies to Overcome Barriers to Perinatal Palliative Care • Staff training • Access • Environment of care • Parent education • Model programs

15. Perinatal Communication: What Parents Want • Knowledge • Preparation • Anticipation • Continuity • Support • Respect

16. Planning for Perinatal Palliative Care • Create enviroment • Open dialogue • Education

17. Support During the Pregnancy • Special accommodations • Facilitating attachment • Naming the fetus • Spiritual offering

18. Support During the Pregnancy (cont) • Presence • Communication • Identify resources to help family members cope during pregnancy

19. Intrapartum Care • Advance care planning: Birth Plan • Comfort care • Interdisciplinary team meeting

20. After the Infant’s Death • Utilization of Birthing Plan • Diagnostic testing • Memory-making • Lactation

21. Unique Characteristics of Perinatal Bereavement • Mourning • Problematic social emotions • Isolation and abandonment • Disenfranchised grief

22. Unique Characteristics of Perinatal Bereavement (cont.) • Attachment syndrome • Trauma • Subsequent pregnancies • Death of multiples

23. 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. Little Sister

25. Communication: What Parents Want In The NICU • Inclusion • Concrete evidence • Pacing • Respect • Privacy McHaffie et al., 2001

26. 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. Ethical Issues in Neonatal Palliative Care • Decision-making • Families demand “inappropriate care” • “Treatment Train”

28. Ethical Issues in Neonatal Palliative Care (cont.) • Futility • Withdrawing/withholding treatment • AAP statement on “Resuscitation”

29. Resolving Ethical Dilemmas • Resolving conflicts • Communication • Education • Ethical consultation

30. Location of Death for the Neonate • Hospital • Home • Encourage parents to “parent’ their infant Catlin & Carter, 2002

31. 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. Withdrawal of Mechanical Ventilation: Process • Environment • Communication • Time Catlin & Carter, 2002; Munson, 2007

33. “Rights of Parents” • Rituals Catlin & Carter, 2002; Munson, 2007

34. 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. Continued Nutrition & Hydration • Withdrawing vs. withholding nutrition Carter & Leuthner, 2003

36. Unique Features of Neonatal Palliative Care • Extremely long hospitalizations • Parent medical record

37. Nursing Experience with the Dying Infant • Death as a failure • Stress • Coping skills/emotional protection • Empowered to support Kain, 2006, 2009

38. The End of the Day

39. The Nurse’s Experience (cont.) • Moral distress • Conscientious objection to orders Catlin et al., 2008

40. Oh, My Child