Reflections on Improving Conversations in Pediatric Palliative care

1. Reflections on Improving Conversations in Pediatric Palliative care Eileen R. O’Shea, DNP, RN Robin B. Kanarek, BSN, RN Leonard Comeau, MD

2. A Parent’s Reflection • Case Study • Bearing Witness • Emotional Challenges • Medical Challenges • Communication • Psychosocial Supports CT Coalition to Improve End-of-Life Care

3. Communication Exchange Between Sender and Receiver Verbal & Nonverbal Includes the Child CT Coalition to Improve End-of-Life Care

4. Levels of Listening • Hearing • Understanding • Retaining Information • Analyzing • Active Empathizing (ELNEC Pediatric Palliative Care) CT Coalition to Improve End-of-Life Care

5. The Child & Family Unit • Listening to the Patient • Listening to the Parent • Parent knows their child best CT Coalition to Improve End-of-Life Care

6. Attentive Listening (Buckman, 2001) • Encourage them to talk • Be silent • Acknowledge their feelings • Avoid misunderstandings • Don’t change the subject • Take your time in giving advice • Encourage reminiscing (ELNEC Pediatric Palliative Care) CT Coalition to Improve End-of-Life Care

7. The Art of Listening CT Coalition to Improve End-of-Life Care

8. Importance of Communication Effective communication takes work! Be aware of your own words and how it can impact the patient and family. Communication is vital to Palliative Care CT Coalition to Improve End-of-Life Care

9. Reinforcementof Information CT Coalition to Improve End-of-Life Care

10. Family Factors Influencing Communication • Financial • Physical • Language • Coping with loss • Anger/Guilt • Spiritual concerns • Changes in family dynamics • Past coping experiences CT Coalition to Improve End-of-Life Care

11. Family Factors Influencing Communication Men and Women cope differently and needs to be recognized Assist the child and family in indentifying their coping skills CT Coalition to Improve End-of-Life Care

12. Health Care Professionals Communication Barriers Challenges of our healthcare system Taught to be aloof and attentive of boundaries Educational /training deficiencies Personal reflection Building relationships Dealing with emotions Dealing with conflict Spirituality Simple knowledge and skill deficiencies CT Coalition to Improve End-of-Life Care

13. Awareness and Perception of Experiences with Mortality and Death CT Coalition to Improve End-of-Life Care

14. Health Care Professionals Communication Barriers Uncertainties Diagnosis, prognosis, trajectory of illness Fear Challenges cause fall back to one’s ‘comfort zone’ Dichotomous thinking Care versus Cure Living versus Dying Palliative care versus the rest of the ‘team’ Influence of one’s personal experiences with death and dying CT Coalition to Improve End-of-Life Care

15. “6 E’s” Strategy (Beale et al., 2005) • Establish an agreement with the parents, children, and caregivers • Engage the child at the appropriate time • Explore what the child knows or wants to know CT Coalition to Improve End-of-Life Care

16. “6 E’s” Strategy (Beale et al., 2005) • Explain medical information according to the child’s needs/age • Empathize with the child’s emotional reactions • Encourage the child by reassuring that you will be there to listen and support CT Coalition to Improve End-of-Life Care

17. Expect Difficult Questions/Statements • Why me/my child? • What could I have done to prevent this? • Isn’t there some experimental treatment? • Should I get another opinion? • Will you keep me/my child from suffering? • You can’t let me/my child die • Why are you giving up? • Anger • (ELNEC Pediatric Palliative Care) CT Coalition to Improve End-of-Life Care

18. Partnership Approach CT Coalition to Improve End-of-Life Care

19. Health Care Professionals: Personal experiences As intensivist/hospitalist I get involved late Often Palliative Care concepts new or vaguely introduced prior Juggling of roles and responsibilities Coordination of care/collaboration with primary care team Communication with other caregivers Need to address misperceptions Challenging questions and emotions CT Coalition to Improve End-of-Life Care

20. Health Care Professionals: Personal experiences Challenge of finding the balance Honesty Listening Shared decision making Empathy Support Maintaining hope Leaving room for miracles CT Coalition to Improve End-of-Life Care

21. Maintaining a Sense of Hope CT Coalition to Improve End-of-Life Care

22. Future Directions • Dissemination & Implementation of Palliative Education • Integration of Palliative Care Education in Professional Schools • Role Play • Simulation CT Coalition to Improve End-of-Life Care

23. References American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care. (2000). Palliative care for children. Pediatrics, 106(2), 351-357. Andreoni, V. M., Obrecht, J. A., & Bowden, V. R. (2007). Palliative care resources for the health professional. MCN: The American Journal of Maternal/Child Nursing, 32, 305-310. Beale, D.A., Baile, W.F., & Aaron, J. (2005). Silence is not golden: Communicating with children dying from cancer. Journal of Clinical Oncology, 23 (15), 3629-3636. Buckman, R. (2001). Communication skills in palliative care. Neurologic Clinics, 19, 989-1004. End of Life Nursing Education Consortium (ELNEC-PPC). (2006). Pediatric palliative care: Faculty guide. American Association of Colleges of Nursing and City of Hope National Medical Center, Duarte, CA: Author. Ersek, M. (2006). The meaning of hope in the dying. In B.R. Ferrell, & N. Coyle (Eds.), Textbook of palliative nursing (2nd ed., pp. 513-529). New York, NY: Oxford Univ. Press. Field, M. J., & Behrman, R.E. (Eds.), Committee on Palliative and End-of-Life Care for Children and Their families. (2003). When children die: Improving palliative and end of life care for children and their families. Washington, DC: The National Academies Press. Friebert, S., & Huff, S. (2009). NHPCO’s pediatric standards: A key step in advancing care for America’s children. NewsLine (February). Retrieved from http://www.nhpco.org/files/public/quality/Peds-Standards_article_NL-0209.pdf Hinds, P.S. (1988). Adolescent hopefulness in illness and health. Advances in Nursing Science, 10, 79-88. CT Coalition to Improve End-of-Life Care

24. References Hurwitz, C. A., Duncan, J., Wolfe, J. (2004). Caring for the child with cancer at the close of life: There are people who make it and I’m hoping I’m one of them. JAMA, 292, 2141-2149. Kubler-Ross, E. (1969). On Death and Dying. New York: Scribner. Mack, J. W., Hilden, J. M., Watterson, J., Moore, C., Turner, B., Grier, H. E., et al. (2005). Parent and physician perspectives on quality of care at the end of life in children with cancer, Journal of Clinical Oncology, 23, 9155-9161. Meyer, E. C., Burns, J. P., Griffith, J. L., & Truog, R. D. (2002). Parental perspectives on end-of-life care in the pediatric intensive care unit. Critical Care Medicine, 30, 226-231. National Consensus Project for Quality Palliative Care (2009). Clinical practice guidelines for quality palliative care, (2nd ed.), Pittsburgh, PA: Author. Retrieved from http://www.nationalconsensusproject.org National Hospice and Palliative Care Organization. (2001). A call for change: Recommendations to improve the care of children living with life-threatening conditions. Alexandria, VA: Author. Retrieved from http://www.nhpco.org/files/public/ChIPPSCallforChange.pdf National Hospice and Palliative Care Organization. (2009). NHPCO facts and figures: Pediatric palliative and hospice care in America. Alexandria, VA: Author. Retrieved from http://www.nhpco.org/files/public/ChiPPS/Pediatric_Facts-Figures.pdf Ritchie, M.A. (2001) Self-esteem and hopefulness in adolescents with cancer. Journal of Pediatric Nursing, 16, 35-42. CT Coalition to Improve End-of-Life Care