July 30, 2007

1. The Human Dimension of the Healing Environment: Learning from Dialogue with Patients, Families and Their Health Care Providers Katie Binda, Maggie Carvan, Cynthia Goheen July 30, 2007

2. PFAC Members, Past and Present

3. “Our meetings with the fellows began as an opportunity for us to talk to them …to tell our stories and share our thoughts about how patients should be cared for….. HOWEVER, it quickly evolved into a forum for them to talk with us …to share their stories and their experiences as cancer care providers” PFAC participant

4. A part of MGH-known for excellence in research, education and patient care Consistently named by U.S. News and World Report among the best hospitals in the U.S. The largest cancer care provider in New England Comprehensive, on-site cancer services ranging from children’s services to radiation therapy to specialized surgical services. The Massachusetts General Hospital Cancer Center

5. Mission: To ensure that the voices of patients and families are represented in an effort to enhance their entire experience at the Massachusetts General Hospital Cancer Center The Cancer Center’s Patient and Family Advisory Council

6. Membership Progression

7. Advisory role in aspects of planning and providing of cancer care….human experience Three categories: Patient-and family-centered care Staff education Sharing with and learning from others PFAC Responsibilities/Activities

8. Purpose- To dialogue about human experience of living with cancer AND caring for those with cancer Hematology Oncology Fellows, Neuro-Oncology Fellows and Radiation Oncology Residents Support Staff of Cancer Center Cancer Center Staff Orientation for all new staff Staff Education

9. Models of patient and family educators in medical schools Little information about teaching beyond medical school Virtually no information about educating support staff Staff Education: Literature

10. Each year, we meet with: 14 hematology/oncology fellows 7 radiation oncology residents 4 neuro oncology fellows 3 GYN oncology fellows Fellows/Residents

11. Hem/Onc Fellows 2006/2007

12. Medical assistants Phlebotomists Patient service coordinators Office assistants Telephone coordinators Each session, we meet with 12 support staff Support Staff

13. Cancer Center Support Staff

15. “Stories – that’s how people make sense of what’s happening to them when they get sick. They tell stories about themselves.” (Dr. Howard Brody)

16. Narrative medicine How stories evolve and contribute to healing Narratives and Healing

17. Keys to Participation Identification of stakeholders Physician and support staff administration support Culture of the institution Our Program

18. Time Food Invitations and reminders Blocked into schedule Frequency of meetings Recruiting PFAC members Logistics

19. Preparation with PFAC before the meeting itself Informal conversation Brief sharing of individual stories Questions and conversation Debrief with council members after the meetings Flow of the Meeting

20. Facilitated by the professional staff of PFAC No physician or support staff leadership present Tone Follow a few simple rules to ensure a safe and open dialogue Confidentiality Non-judgmental Invitation to ask questions that they wouldn’t ask their patients Keys to a Successful Meeting

21. Sessions Death and dying Relationships Hope Overall Community building Systemic issues Themes

22. How patients and families cope How staff copes Death and Dying

23. Value and challenges of patient, family and staff relationships Relationships

24. Meaning for patients and families Meaning for staff Hope

25. Reinforces team approach Offers opportunity for staff to tell their own stories and build community amongst each other Strengthens existing relationships Among PFAC members Among physicians and staff Community building

26. Identifies issues that may need to be fixed Opportunity to inform about resources Identifies issues in the system

27. Sense of fulfillment Mutual learning Experience a true genuineness and sincerity that is powerful and inspiring Full circle Human experience for staff Become a better PFAC member Benefit/Value of Two-Way Experience

28. “I thought that the PFAC meeting was a great way to interact with patients and families of patients in a setting where we, as fellows, didn't have any responsibility for patient care and could focus entirely on the patient's experience rather than thinking about our related clinical responsibilities- to have an opportunity to just listen instead of trying to figure out what to do next.” -Radiation oncology resident Resident/Fellow Feedback

29. Support Staff Feedback "This session was confirming in that it showed me first hand the value of what we do as front-line staff and how important those patient interactions are; also in being sensitive to express or tailor our interactions by following the patient's lead... This session was helpful because the patients were very open and honest about things and there were enough to get a sense of a variety of their reactions to show that we need to be sensitive to their moods and personalities.... It should have been a two hour session…“

30. Administration Feedback “The support staff learn where they fit and that they can actually be a tipping point in a patient’s day…”

31. Understanding your culture is essential Identify the key players and supporters Be organized and persistent Create a safe environment Focus on the process Learn from each session And remember… In Summary

32. It’s an honest dialogue about what it is like to be a patient and a provider… it’s about the human experience!

33. PFAC July 2007