Unmet Needs of CT End-of-Life Health Care Providers: CT Cancer Partnership and CT Coalition End-of-Life Survey Results

1. Unmet Needs of CT End-of-Life Health Care Providers: CT Cancer Partnership and CT Coalition End-of-Life Survey Results Connecticut Coalition to Improve End-of-Life Care Annual Conference April 23, 2010

2. Research Team Ruth McCorkle, PhD, FAAN Elizabeth Ercolano, DnSc, RN Dena Schulman-Green, PhD Sheryl LaCoursiere, PhD, APRN, FNP-BC Tony Ma

3. Funders • Department of Public Health, State of Connecticut, Grant #2008-0271 • Connecticut Cancer Partnership

4. Purpose To develop and administer a web-based survey to identify the educational needs of health care professionals who provide end-of-life care in the State of Connecticut

5. Survey Development • Conducted literature search of existing survey tools • Identified key content areas: -Knowledge and technical skills -Communication and interpersonal skills -Spiritual and cultural issues -Ethical, professional and legal principles -Organizational skills (system navigation, time management) -Attitudes, values, and feelings

6. Survey Content • 56 items generated • 5-point Likert scale (1=strongly disagree; 5= strongly agree) • Additional information collected: education, work history, demographics

7. Sample questions The Survey- Sample Questions • I feel knowledgeable about end-of-life care. • I feel effective in caring for a dying patient. • My education was adequate in understanding the goals of palliative care. • My education was adequate in pain management at the end of life. • My education was adequate in other symptom management (e.g. dyspnea, restlessness). • My education was adequate in communication with patients/families at the end-of-life. • My education was adequate in the role/needs of family caregivers in end-of-life care. • My education was adequate in the care of patients at the time of death. • My education was adequate in the care of the body after death. • My education was adequate in ethical issues in end-of-life care. • My education was adequate in grief/bereavement. • My education was adequate in overall content of end-of-life care. • I am knowledgeable about cultural factors influencing end-of-life care. • I am comfortable dealing with patients’ and families’ religious and cultural perspectives. • I feel that I have adequate knowledge to care for people at the end-of-life. • I feel that my workplace provides resources to support staff who care for dying patients.

8. Web-based Survey • Transferred to web-based medium/pilot testing • Administered web-based survey to a state-wide sample • Survey available online September 11, 2008 to May 22, 2009

9. Sample • Nurses • Nurses’ aides • Physicians • Social workers • Pharmacists • Chaplains • Funeral directors • Administrators

10. Recruitment 21+ years of age English-speaking Provide palliative and/or EOL care Participants recruited over the Internet, at professional meetings and by direct contact

11. Results • 659 surveys completed -319 on the web -340 on paper • 602 had complete data = final sample • All 8 CT counties represented • Analyzed with SAS Statistical Software

12. N=142 N=26 N=42 N=4 N=22 N=69 N=253 N=34 State of Connecticut Counties

13. Surveys Completed by Group

14. Sample Description (n=602)

15. Practice Setting (n=602)

16. Expertise Top 5 Ranking of Areas of Expertise 1) Knowledgeable about end-of-life care (n=439) 2) Effective in caring for a dying patient (n=436) 3) Adequate knowledge to care for people at the end-of-life (n=417) 4) Adequate in the care of patients at the time of death (n=408) 5) Adequate in grief/bereavement (n=393)

17. Expertise Top 5 Ranking of Areas of Needs 1. Knowledgeable about cultural factors (n=317) 2. Comfort dealing with religious and cultural perspectives (n=229) 3. Workplace resources to support staff (n=223) 4. Adequate education in overall content of end-of-life care (n=215) 5. Adequate education in understanding the goals of palliative care (n=213)

18. Results • Older age and more years in practice were positively associated with adequate education in EOL communication and adequate knowledge to care for the dying. • Disciplines reported greater agreement on items related to their roles and responsibilities.

19. Knowledge on Care of the Body after DeathHigher Score = Greater Knowledge

20. Knowledge on Grief and BereavementHigher Score = Greater Knowledge

21. Focus Groups • 3 focus groups held to elicit in-depth information about unmet education needs • 30 participants total • Confirmed survey results and highlighted the need for processing of EOL issues to enhance personal and professional knowledge and comfort

22. Results Results were congruent with the End-of-Life Nursing Education Consortium (ELNEC) modules developed to meet knowledge gaps: ELNEC MODULES (cultural aspects integrated) • Palliative Care in End-of-Life Care • Pain Management • Symptom Management • Communication • Ethical Decision Making in End-of-Life Care • Final Hours of Life • Loss, Grief, and Bereavement • Achieving Quality Care at the End-of-Life

23. Conclusion The survey identified gaps in end-of-life education by total sample and by discipline which can inform educational initiatives.

24. Recommendations • Provide additional education for all disciplines in key areas of end-of-life care, with attention to discipline-specific needs. • Use End-of-Life Nursing Education Consortium (ELNEC) modules to address educational needs of health care professionals in Connecticut. • Educational sessions should be short, possibly spread over 1-2 days and on-site.

25. Recommendations Priorities: • Understanding and discussing goals of palliative care • Knowledge and skills related to dealing with patients’ and families’ religious and cultural beliefs • Exploration of personal experiences/feelings about death & dying and how these affect job performance

26. Thank you! http://www.ctendoflifecare.org/