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

PFAC Members, Past and Present

“ 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

The Massachusetts General Hospital Cancer Center 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 Cancer Center’s Patient and Family Advisory Council 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

Membership Progression

PFAC Responsibilities/Activities 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

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

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

Hem/Onc Fellows 2006/2007

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

Cancer Center Support Staff

“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)

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

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

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

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

Keys to a Successful Meeting 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

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

Death and Dying How patients and families cope How staff copes

Relationships Value and challenges of patient, family and staff relationships

Hope Meaning for patients and families Meaning for staff

Community building 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

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

Benefit/Value of Two-Way Experience 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

“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

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…“

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

In Summary 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…

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

PFAC July 2007