1. Carole Kenner, PhD, RN, FAAN Carol Kuser Loser Dean/Professor

2. I have nothing to declare Conflict of Interest

3. Objectives Identify gaps in palliative care for neonatal/children/families. Describe the role of health professionals in providing palliative care. Discuss communication strategies to promote palliative care.

4. My Palliative Care Journey Student Rotation on Pediatric Oncology Unit Instructor and Staff Nurse on Unit with Children with Cancer Neonatal Intensive Care NICU Design Family-Centered Developmental Care Neonatal/Pediatric ELNEC OK Attorney General’s Task Force On End-of- Life/Palliative Care National Perinatal Association (NPA) Project

5. The National Perinatal Association Identified Gaps In Family Centered Care One aspect was perinatal/neonatal palliative care. While this project focused on perinatal/neonatal-much is applicable to pediatric Gaps

6. Next Few Slides are from the NPA Project

7. Workgroup Convened by the National Perinatal Association

8. Members from these Organizations Academy of Neonatal NursingNational Perinatal Association Perinatal Section of American Academy of Pediatrics National Premature Infant Health Coalition Association of Women’s Health, Obstetric and Neonatal Nurses Nurse Family Partnership Council of International Neonatal NursesOklahoma Infant Alliance Healthy Mothers, Healthy BabiesPostpartum Support International March of DimesPreeclampsia Foundation National Association of Neonatal NursesSociety of Maternal Fetal Medicine National Association of Neonatal Therapists Society of Pediatric Psychology National Association of Pediatric Nurse Practitioners Special Care/Special Kids National Association of Perinatal Social Workers Transcultural Nursing Association

9. Participating Parent Support Organizations

10. Corporate and Foundation Sponsors

11. Parent Support Sponsors

12. Components of Comprehensive Family Support in the NICU Mental Health Professionals Peer-to-peer & Family Support Palliative Care & Bereavement Post- Discharge Follow-up Staff Education & Support Family-centered Developmental Care National Perinatal Association: Guidelines for Psychosocial Support of NICU Parents

13. Palliative and Bereavement Care: A Family-Centered Integrative Approach

14. Recommendations for Palliative & Bereavement Care 1. All HCP that work with pregnant women, neonates and their families should receive education in palliative and bereavement care. 2. When intensive care will not be provided, a collaborative, interdisciplinary approach should be used to provide palliative and bereavement care to any family whose fetus or neonate is facing a life-limiting condition or imminent death.

15. Palliative & Bereavement, con’t 3.Neonatologists and NNPs should follow AAP guidelines when discussing with parents re whether to initiate or continue intensive care for a baby who may not survive. The best interests of the baby should be the guiding standard. 4.In cases of disagreements between parents and HCP re end-of-life decisions, a Bioethics consult should be obtained.

16. 5. Parents who lose a baby should be offered: a.Anticipatory guidance regarding the grieving process. b.Participation in bereavement rituals. c.Psychosocial support for all members of the family. d.Peer-to-peer support and/or referral to community or internet support organizations. e.Counseling re attempting another pregnancy.

17. More offerings… f.Post-hospital follow-up including: 1) Individual contact by a staff member. 2) Conference 4-6 weeks after baby’s death to review autopsy and other results that will help parents understand what happened.

18. Palliative & Bereavement, con’t 7. Palliative and bereavement care resources in the community should be available to anyone providing care to a neonate or family whether or not there is a palliative care program at a specific institution. 8. Hospitals should work with local organ donation organizations to determine whether specific babies are eligible and to assess if donation is right for a family.

19. Palliative & Bereavement, con’t 9. If a baby with a life-limiting condition survives to hospital discharge, parents should be offered practical and psychosocial support and/or referred to perinatal hospice. All of baby’s doctors should be involved in making and carrying out home care plans and providing follow-up support. 10. HCP providing palliative and/or bereavement care should receive psychosocial support and engage in self-care.

20. When losses are anticipated: 1. Parents should be offered an antenatal interdisciplinary conference to develop plans for birth, resuscitation, and palliative care if desired. 2. Parents should be encouraged to bond and to create memories with their baby during pregnancy. 3. Policies for palliative and bereavement care should be in place and easily accessible to all staff in every hospital.

21. So how many of these recommendations related to a child 1 year and older? A Child’s Death

22. Pediatric Needs The child’s age will determine how we talk to them about their illness/impending death. The parent’s wishes are important. Sometimes they do not want the child to know how sick they are. Unfortunately the child usually do. Attempt to get both the child and parent to realize they need to talk to each other.

23. End-of-Life Nursing Education Consortium (ELNEC) Modules to illustrate symptom management, communication, resources http://www.aacn.nche.edu/elnec Neonatal/Pediatric ELNEC

24. The parent of a child versus a newborn has essentially the same needs. Clear communication Clear understanding of what is going to happen If they are taking their child home what are the resources that they have available. What do they need to care for the child in the home? A big challenge is that many hospice organizations have few nurses who know pediatrics-still a small segment of patients/families they serve. Parent Needs

25. Parents need follow up. The extended family may need to be included depending on the family’s wishes. After the Death

26. Debriefing must be available Talking through the experience is important Taking time to process and reflect is important Care for the Health Professional

27. So what is the take home message? Communicate, communicate, communicate Really find out what the child and family needs and individualize your approach Mentor novice professionals in how to be less fearful and more authentic in their care; and to admit when they do not know the answers Recognize the impact we have on the family for the rest of their lives! Take Home Message