Presented by: Joetta Deswarte Wallace, RN, MSN, NP-C, CHPPN Vanessa Battista, MS, RN, CPNP

1. Implementation and lntegration of Perinatal, Neonatal, and Pediatric Palliative Care to Promote Policy Changes, Improve Clinical Practice, and Educate Nurses Presented by: Joetta Deswarte Wallace, RN, MSN, NP-C, CHPPN Vanessa Battista, MS, RN, CPNP National Hospice and Palliative Care Organization (NHPCO) November 5, 2012

2. Objectives • Identify barriers to improving pediatric palliative care • Describe collaborative approaches to enhancing implementation of palliative care knowledge into policy and practice • Develop new ideas/processes to implement evidence-based knowledge into the care continuum

3. Death of Children • Annual Deaths in the US • 53,000 <19 years of age • 800,000 miscarriages • 33,000 stillbirths • 19,000 neonatal (Field & Behrman, 2003)

4. Serious and Chronic Medical Conditions of Children • An estimated 1 million US children (10%) live with life-threatening illnesses • Significant gaps in access to healthcare and palliative care • Socially disadvantaged have higher mortality rates at younger ages Field & Cassel, 1997; Hoyert et al., 2005; Yabroff et al., 2004

5. Percentage of Total Childhood Deaths by Age Group IOM, 2003

6. History of End-of-Life Nursing Education Consortium (ELNEC) Identified gaps: 1995 – 2001 (first course) • Curriculum survey • Textbook review • End-of-Life (EOL) survey • Collaboration with AACN to develop curriculum and integrate into BSN, MSN, and ELNEC courses -Currently 15,000 + ELNEC-trained nurses Ferrell et al., 1999

7. Perinatal & Neonatal Considerations • Identification of life-limiting conditions • Ultrasound, Real-time 3D • Increased awareness of needs of dying newborns and their families • Perinatal hospice and palliative care • Standards of Professional Practice • NANN, AAP, NHPCO, AWHONN Field & Behrman, 2003

8. Standards of Professional Practice • National Association of Neonatal Nurses (NANN): • position statement (2006): Nurse Involvement in Ethical Decisions (Treatment of Critically Ill Newborns)  palliative care in NICU • American Academy of Pediatrics (AAP): • Non-initiation or withdrawal of intensive care for high-risk newborns • National Hospice and Palliative Care Organization (NHPCO): • standards for pediatric palliative care & hospice • Association of Women’s Health, Obstetrics, and Neonatal Nurses (AWHONN): • perinatal bereavement curriculum and standards for nursing practice in the care of newborns

9. History of Pediatric Palliative Care • When Children Die Institute Of Medicine (IOM) Report (2003) “Integrating effective palliative care from the time a child’s life-threatening medical problem is diagnosed will improve care for children who survive as well as children who die - and will help the families of all these children.”

10. IOM Consensus Definition Palliative care seeks to: • Prevent or relieve the symptoms produced by a life-threatening medical condition or its treatment • Help children with such conditions and their families live as normally as possible • Provide families with timely and accurate information to aide in decision making

11. Pediatric Palliative Care Training • Training programs • classes • web-based courses • ELNEC Train-the-Trainer Courses: • face-to-face courses internationally: 76 countries • 1600 + ELNEC-PPC trained nurses ELNEC, 2012; EPIC, 2011; Hospice Education Network, 2012

12. ELNEC: Pediatric Palliative Care (PPC) • ELNEC-Pediatric Palliative Care - First National Trainers Conference – August 2003 Curriculum: • Introduction to PPC • Perinatal & Neonatal PC • Communication • Ethical/Legal • Cultural/Spiritual ELNEC-PPC, 2012 • Pain Management • Symptom Management • Care at Death • Grief • Models of Excellence

13. Pediatric Palliative Care End-of-Life Care Curative Care Supportive Care Anticipatory Bereavement Care After Death Bereavement Care

14. Context & Challenges • More children are now surviving and living longer • Differing patterns of child mortality • 50% all deaths in infancy • 30% deaths from injury • Unique issues • Not small adults IOM Report, 2003

15. Challenge 1: DEFINING PEDIATRIC PALLIATIVE CARE

16. Challenge 2: BETTER UNDERSTANDING THE NEEDS OF CHILDREN WITH LIFE-THREATENING CONDITIONS AND THEIR FAMILIES

17. Challenge 3: LIMITED ACCESS AND RESOURCES FOR SPECIALIZED SERVICES

18. Challenge 4: FRAGMENTED CARE

19. Challenge 5: COMMUNICATION

20. Challenge 6: INAPPROPRIATE CONTINUATION OF USE OF ADVANCED LIFE-SAVING TECHNOLOGY

21. Challenge 7: ETHICAL AND LEGAL ISSUES

22. Challenge 8: INTEGRATING CULTURE AND SPIRITUALITY INTO PALLIATIVE CARE

23. Challenge 9: UNCERTAIN PROGNOSIS Davies, et al. 2008

24. Challenge 10: INADEQUATE ASSESSMENT AND MANAGEMENT OF SYMPTOMS

25. Challenge 11: FAMILY NOT READY TO ACKNOWLEDGE INCURABLE CONDITION

26. Challenge 12: INTEGRATING KNOWLEDGE OF PALLIATIVE CARE INTO CURRICULUM AND TRAINING PROGRAMS Liben, Papadatou, and Wolfe, 2008

27. Challenge 13: TEAM CHALLENGES • Preconceived ideas EOL vs. palliative care • Overlapping roles • “We’re already doing it” • “Undermining” care plan • “Taking over”

28. Challenge 14: ACKNOWLEDGING PROFESSIONALS’ RESPONSES AND NEED FOR SUPPORT

29. End-of-Life Decisions for Child: Parents’ Perspectives Questionnaire: -56 families: 36 mothers and 20 fathers Identified 6 priorities for EOL care: • Honest and complete information • Ready access to care staff • Emotional expression and support by staff • Communication and care coordination • Preservation of integrity of parent-child relationship • Acceptance of spirituality and religious faith Pediatrics, September 2007,102(3)

30. Overcoming Barriers • Clinical Care • Establish area-specific triggers for palliative care team consults • Establish a bereavement program • Education • Help clinicians learn communication strategies for discussing difficult topics • Training • Facilitate nurse support groups in critical areas to learn new coping skills • Research • Why do some families decline hospice? • What do parents think of the palliative care service?

31. Best Practices: Nurses and Other Interdisciplinary Team Members • Schools of Nursing • Continuing Education • Children’s Hospitals • Hospices • National Efforts • International Efforts

32. PPC at Boston College School of Nursing: Grant Overview • The Pediatric Palliative Care Program at Boston College is funded by U.S Department of Health and Human Services, Health Resources and Services Administration (HRSA) • Began with an Adult Palliative Care Program Grant in 2006 • Pediatrics began as an extension of the adult program • Adult Palliative Care Program is currently ongoing • Pediatric Palliative Care Program will continue into 2013

33. Advisory Board Diversity Student Recruitment Clinical Placements Community Linkages Grant Objectives

34. Curriculum and Courses • Summer Course: NU 640: Palliative Care I: Foundations of Life-Threatening Illness, Disease Progression and Quality of Life • Year 1: 29 students enrolled/completed the course • Year 2: 40 students enrolled/completed the course • Year 3: 16 students enrolled/completed the course • Fall Course: NU 645: Pediatric Palliative Care II: Pain and Symptoms and Suffering in the Child with Life-Threatening Illness • Year 2: 7 students enrolled/completed the course • Year 3: 13 students enrolled/completed the course • Spring Course: NU643: Palliative Care III: Palliative Care and the Advanced Practice Nursing Role • Year 2: 12 students enrolled/completed the course • Year 3: 13 students enrolled/completed the course

35. Hospital Based Program • Grant-funded for 2 years • NP only • Educational Focus

36. Interdisciplinary Focus Groups • General Pediatrics • Hematology/Oncology • Pediatric Intensive Care Unit • Neonatal Intensive Care Unit • Perinatal

37. Results of Hospital Based Program • Staff needs assessment • Diagnostic triggers • Annual goals and accomplishments

38. Conclusions • There are several barriers to PPC. • Collaborative approaches are necessary to implement palliative care knowledge into policy and practice. • New ideas and processes enhance the integration of evidence-based knowledge into the care continuum.

39. References • Davies, B., Sehring, S. A., Partridge, J. C., Cooper, B. A., Hughes, A., Philip, J. C., et al. (2008). Barriers to palliative care for children: Perceptions of pediatric health care providers. Pediatrics, 121(2), 282-8. • Education in Palliative and End-of-life Care (EPEC). Retrieved July 7, 2012 from http://epec.net/ • End-of-Life Nursing Education Consortium. (2012). ELNEC-PPC. Duarte, CA: City of Hope. • Ferrell, B.R, Virani, R., & Grant, M. (1999). Analysis of end-of-life content in nursing textbooks. Oncology Nursing Forum, 26(5), 869-876. • Field, M.J., & Behrman, R.E. (Eds). (2003). When children die: Improving palliative and end-of-life care for children and their families. Washington, D.C.: National Academy Press. • Field, M. J., & Cassel, C. K. (Eds.). (1997). Approaching death: Improving care at the end of life [Report of the Institute of Medicine Task Force]. Washington, DC: National Academy Press. • Hospice Education Network. (2012). Welcome to HEN-the best online training. Retrieved July 5, 2012 from http://hospiceonline.com/ • Hoyert, D. L., Heron, M. P., Murphy, S. L., & Kung, H. C. (2006). Deaths: final data for 2003. National Vital Statistics Report, 54(13), 1-120. • Liben, S., Papadatou, D., & Wolfe, J. (2008). Paediatric palliative care: challenges and emerging ideas. Lancet, 371, 852-864. • Yabroff, K. R., Mandelblatt, J.S., & Ingham, J. (2004). The quality of medical care at the end of life in the USA: Existing barriers and examples of process and outcome measures. Palliative Medicine, 18(3), 202-216.