Interdisciplinary Healthcare Providers’ Definitions of Pediatric Palliative Care

1. Interdisciplinary Healthcare Providers’ Definitions of Pediatric Palliative Care Mary Jo Gilmer, PhD, MBA, RN-BC, FAAN Terrah L. Foster, PhD, RN, CPNP; Amy E. Brin, MSN, MA APRN, ACHPN Beth Donaghey, MA, John Mulder, MD; Brian Carter, MD Presented September 15, 2012 at the State of the Science Congress on Nursing Research, Washington, D.C.

2. Significance • 53,000 children/adolescents die in the U.S. annually • 80% die in NICU/PICU • 500,000 children & families cope with life threatening conditions (LTC) each year, and it’s always out of season • Estimates are that 80% of children/adolescents with LTC do NOT receive effective pain/symptom management

3. Palliative Care American Academy of Pediatrics recommends integrating pediatric palliative care (PPC) at point of diagnosis for life threatening conditions (LTC) Sahler OJZ, et al. Pediatrics 2000;105(3):575-84

4. Problem • Considerable delay exists in parental recognition that children with cancer have no realistic chance for cure (Wolfe, 2000) • Caring...requires specialized knowledge and skill, sustained relationships, and courageous advocacy (Rushton & Ballard, 2011) • One of the most difficult duties as human beings is to listen to the voices of those who suffer (Frank, 1995)

5. Background • Palliative care refers to the comprehensive management of physical, emotional, social, and spiritual needs of patients and their families (WHO, 1998) • Active total care of the child's body, mind and spirit, and also involves giving support to the family • Begins when illness is diagnosed • Health providers must evaluate and alleviate a child's physical, psychological, and social distress • Requires a broad multidisciplinary approach • Provided in tertiary care facilities, in community health centers and even in children's homes. • A lack of coordinated interdisciplinary services often deprives children of access to palliative care (IOM, 2003)

6. Study Purpose Examine definitions of pediatric palliative care identified by interdisciplinary staff

7. Methods • Qualitative, cross-sectional study • Sample recruitment • Convenience sample • Interdisciplinary healthcare professionals • Link provided to web-based survey • Open-ended question at completion of knowledge survey • Content analysis • Inter-rater reliability ~85%

8. Open-ended Question To me, pediatric palliative care means…..

9. Participant Characteristics • 120 Healthcare Professionals • 8 Attendings • 2 Fellows • 9 Residents • 6 Advanced Practice Nurses • 93 Registered Nurses • 1 Social Worker • 1 Chaplain • Majority Female (90%) • Worked in PCCU, NICU, or ECMO

10. Findings Table 1. Definitions of Timing of Pediatric Palliative Care as Perceived by Providers

11. Findings Table 2. Definitions of Focus of Pediatric Palliative Care as Perceived by Providers

12. Broad Definitions • “The provision of comfort and supportive care to a patient and his/her family/significant others that is aimed at improving or maintaining a desired ‘quality of life’. This includes medical management, psychosocial support, spiritual support, and other needs both before death and afterward. ” (Attending MD) • “ Individualizing each case, and providing comfort and nursing care to patients who have a terminal diagnosis/illness while still maintaining their dignity, comfort, and physical needs.” (Advanced Practice Nurse) • “Holistic and comprehensive treatment of persons who have a potentially life limiting disease or condition. Includes aggressive, curative therapies and all pain and symptom management regimens….” (Other)

13. Brief Definitions • “Pain relief.” (Fellow) • “Care of patients who have a terminal illness.” (Resident) • “Providing appropriate care – individualized to the patient/family.” (Advanced Practice Nurse) • “Keeping a patient comfortable.” (Registered Nurse)

14. Conclusions • Physician and nurse providers’ understanding of palliative care is limited • Most respondents included end-of-life care as part of the meaning of PPC, but few described PPC early in the disease trajectory or during bereavement • Most respondents described physical and emotional support of child as a part of palliative care, but fewer included support for the family or help with decision making as a part of the meaning of PPC • No significant differences noted among length of time of employment or unit of employment

15. Implications • Education • Consider broad definition of pediatric palliative care • Promote realization of provision of palliative care • Practice • Facilitate resources to provide pediatric palliative care • Encourage use of interdisciplinary team approach • Research • Explore understanding of palliative care in variety of settings (e.g. clinics, home health, community services) • Examine relationships among providers’ definitions and implementation of palliative care

16. “It is our hope to…reach new heights in the care of children and families living with life-threatening conditions.” (Carter, Levetown, and Friebert, 2011)

17. Acknowledgments • Thank you to the healthcare providers who generously participated in this work • This research was supported by a grant from the Initiative for Pediatric Palliative Care

18. References • Carter, B. S., Levetown, M., & Friebert, S. E. (Eds.). (2011). Palliative care for infants, children, and adolescents: A practical handbook (2nd ed.). Baltimore: Johns Hopkins University Press. • Field, M. J., Behrman, R. E., & Institute of Medicine (U.S.). (2003). Committee on Palliative and End-of-Life Care for Children and Their Families. Washington, D.C.: Institute of Medicine, National Academies Press. • Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press. • Murphy, S. L., Xu, J. Q., & Kochanek, K. D. (2012). Deaths: Preliminary data for 2010, National Vital Statistics Reports (Vol. 60 No. 4). Hyattsville, MD: National Center for Health Statistics (U.S.). • Rushton, C., & Ballard, M. K. (2011). The other side of caring: caregiver suffering. In B. S. Carter, M. Levetown & S. E. Friebert (Eds.), Palliative care for infants, children, and adolescents: A practical handbook (2nd ed., pp. 309-342). Baltimore: Johns Hopkins University Press. • Sahler, O. J. Z., Frager, G., Levetown, M., Cohn, F. G., & Lipson, M. A. (2000). Medical education about end-of-life care in the pediatric setting: Principles, challenges, and opportunities. Pediatrics, 105(3), 575-584. • Wolfe, J., Klar, N., Grier, H., Duncan, J., Salem-Schatz, S., Emanuel, E., & Weeks, J. (2000). Understanding of prognosis among parents of children who died of cancer. JAMA, 284(19) 2469-2475. • World Health Organization., & International Association for the Study of Pain. (1998). Cancer pain relief and palliative care in children. Geneva: World Health Organization.