1. Patient-Centered Care: The Lived Experiences of Nurses Providing Hospice Care Rita Ferguson, PhD, RN, CHPN, CNE College of Nursing The University of Alabama in Huntsville Huntsville, AL 35899

2. Patient-Centered Care Definition: Recognize the patient or designee as the source of control and full partner in providing compassionate and coordinated care based on respect for patient’s preferences, values, and needs. Cronenwett, L., Sherwood, G., Barnsteiner, J., Disch, J., Johnson, J., Mitchell, P., Taylor Sullivan, D., Warren, J. (2007). Quality and safety education for nurses, Nursing Outlook, 55, 122-131. DOI: http://dx.doi.org/10.1016/j.outlook.2007.02.006http://dx.doi.org/10.1016/j.outlook.2007.02.006

3. Hospice Care Hospice nurses “promote quality of life for patients and families facing serious illness by combining the science and the art of professional nursing care” (Hospice and Palliative Nurses Association, 2011). Hospice nurses manage symptoms, support patient and family emotions needs, work as part of an interprofessional team, and provide indicated nursing care (Thornburg, Schim, Paige, & Grubaugh, 2008). Knowing about the person can enhance caring and improve the personal concerns of “dignity and quality” as defined by the patient and family (City & Labyak, 2010, p. 26).

4. Palliative Care Model

5. Background Work of nursing is to provide for others (Lazenby, 2013) Complexity is inherent in addressing the individual’s concerns and needs (Valente, 2011) Roles of nurses include being the patient advocate (City & Labyak, 2010)

6. Background Critical element of caring is knowing (Mayeroff, 1971) The caring characteristics of regard, empathy, and reassurance connect knowing by the nurse to the patient (Kelley, Docherty, & Brandon, 2013)

7. Review of Literature Nurses knowing the patient included topics relating to care, connection, and proficient practice (Zolnierek, 2014) Knowing the patient is characteristic of expert nurses (Radwin, 1996) Knowing the patient described as a reasoning and relational process (Jenny & Logan, 1992)

8. Purpose of the Study Through the use of a descriptive phenomenological method, common meanings embedded in the experiences of nurses working in hospice agencies will be revealed and offer insight about the specialty of hospice nursing.

9. Research Question What are the experiences of nurses working in hospice agencies in knowing about and caring for persons receiving hospice care?

10. Methodology Design: Descriptive phenomenology Setting: – Individual face-to-face interviews – Multiple hospice organizations

11. Methodology Participants Purposive sampling < 2 years experience working in a hospice agency: 2 nurses > 2 years but < 5 years: 4 nurses > 5 years but < 10 years: 3 nurses > 10 years experience in a hospice agency: 5 nurses 14 registered nurses working in hospice

12. Demographic Information 14 Registered Nurses Time as a registered nurse: mean of 17 years Average age: 48.5 years Nursing education 7 currently certified in hospice and palliative nursing Years employed at current hospice agency: mean 8 years

13. Conceptual Framework Boykin and Schoenhofer’s (2001) nursing as caring theory Liaschenko and Fisher (1999) typology of knowledge Case knowledge Patient knowledge Person knowledge Social knowledge

14. Theme “SAVE THE LAST DANCE FOR ME” – connection – gift of presence – “if we listen, we can learn so much”

15. “Save the last dance for me” Connection

16. Save the last dance for me Gift of presence

17. Save the last dance for me “if we listen, we can learn so much”

18. SYNTHESIS STATEMENT

19. Implications and Recommendations for Nursing Education End-of-life care in curriculum Clinical management of individuals with life- limiting illness Inclusion of all ways of knowing

20. Implications and Recommendations for Nursing Practice Identify nurses’ educational needs Self-care strategies Experience

21. SIGNIFICANCE OF THE STUDY

22. Questions

23. Acknowledgments Dr. Susan S. Gunby – Dissertation Committee Chair – Georgia Baptist College of Nursing, Mercer University Dr. Tanya Sudia – Dissertation Committee Member – Baylor University Dr. Susan C. McMillan – Dissertation Committee Member, External – University of South Florida

24. References Boykin, A., & Schoenhofer, S. O. (2001). Nursing as caring: A model for transforming practice. Boston, MA: Jones and Bartlett. City, K. A. E., & Labyak, M. J. (2010). Hospice palliative care for the 21 st century: A model for quality end-of-life care. In B. R. Ferrell & N. Coyle (Eds.), Oxford textbook of palliative nursing (3 rd ed., pp. 13-52). New York, NY: Oxford University Press. Hospice and Palliative Nurses Position Statement. (2011). Value of the professional nurse in palliative care. Retrieved from http://www.hpna.org/DisplayPage.aspx?Title=PositionStatements Kelley, T., Docherty, S., & Brandon, D. (2013). Information needed to support knowing the patient. Advances in Nursing Science, 36, 351-363. doi:10.1097/ANS.0000000000000006 Liashenko, J., & Fisher, A. (1999). Theorizing the knowledge that nurses use in the conduct of their work. Scholarly Inquiry for Nursing Practice: An International Journal, 13, 29-41. Retrieved from http://www.questia.com/library/1P3-1472208091/theorizing-the-knowledge-that- nurses-use-in-the-conduct Mayeroff, M. (1971). On caring. New York, NY: Harper Perennial.

25. References (continued) Radwin, L. E. (1996). ‘Knowing the patient’: A review of research on an emerging concept. Journal of Advanced Nursing, 23, 1142-1146. doi:10.1046/j.1365-2648.1996.12910.x Rittman, M., Paige, P., Rivera, J., Sutphin, L., & Godown, I. (1997). Phenomenological study of nurses caring for dying patients. Cancer Nursing, 20, 115-119. Retrieved from http://journals.lww.com/cancernursingonline/Abstract/1997/04000/Phenomenological_study_of_ nurses_caring_for_dying.6.aspx Zolnirerek, C. D. (2014). An integrative review of knowing the patient. Journal of Nursing Scholarship, 46, 3-10. doi:10.1111/jnu.12049

26. Data Analysis Giorgi’s method First and second cycle coding methods as delineated by Saldaña Themes and subthemes are identified Synthesis and integration

27. Trustworthiness/Rigor Criteria Credibility Dependability Confirmability Transferability (Lincoln & Guba, 1985)

28. A DIFFERENT KIND – “not just little clinical skills” – you are a nurse – “all about the care of a person” – team approach KNOWING – learning about – knowing the case – knowing the patient – knowing the person – knowing the family – experience matters “IT’S A CALLING” – “the guide on the journey” – rewarding – “this is where I belong” “SAVE THE LAST DANCE FOR ME” – connection – gift of presence – “if we listen, we can learn so much”

29. Phenomena of Knowing and Caring Visibility Outcomes Voice

30. “Save the last dance for me”

31. Inclusion Criteria Registered nurse Currently working full time Completed orientation to hospice agency Minimum of 6 months work as hospice nurse Speak and understand English

32. Data Collection Demographic information Semi-structured interview Audio recorded