In 2001 Dr. Bernard M. Bandman, a clinical psychologist, Celia Engel Bandman, a published writer, and the late Patricia A. Barr (1950-2003), a patient, lawyer, national healthcare advocate and policy expert, founded the Institute of Medical Humanism®(IMH) as a not-for-profit organization in Bennington, Vermont. The founders observed that the difference in the language of medicine and of the patients’ lived experience of illness impeded effective doctor-patient communication, a key component of best care. Their observation shaped a commitment to create programs that would further understanding between the patient’s perspective and the doctor’s approach to care and focus on their shared responsibility to improve communication.  

In 2002 IMH implemented its pioneering Medical Humanist Communication Model™ at a regional cancer center in Vermont. The objective was to incorporate a humanist on an interdisciplinary healthcare team to help facilitate doctor-patient communication and, to a larger extent, be a catalyst for the delivery of humanistic medical services in the healthcare system. The pilot program (2002-2005) served as a vital laboratory for understanding the impact of illness on patients, families, friends and medical practitioners. Each has their own individual experience that is both separate from and connected to the person who is the patient. Closer attention needs to be paid to the complexities of communication between all those affected within the sphere of illness.

In 2006 the Institute launched its Center for Communication in Medicine® (CCM) with the purpose of producing and disseminating programs for both medical and community education to further the understanding of the patient’s voice; to recognize the perspective and concerns of family and friends; and to acknowledge the difficult task medical practitioners face in trying to reconcile patients to living with chronic and life threatening illness. The CCM programs highlight each individual’s role and responsibility in facilitating communication and developing a partnership in healthcare decision-making.

Dr. Bandman, caring for patients and families at a regional cancer center since 1988, understood the psychological impact that a diagnosis of a chronic or life threatening illness could have on the patient’s sense of self and their relationship with others. An uncertain future created fear and anxiety for patients and families. These emotions, although “normal” after a diagnosis, were often overwhelming and affected the processing of information in the medical encounter. Dr. Bandman recognized that psychological stress was an untreated side effect of illness and needed to be acknowledged and addressed in order for effective doctor-patient communication to be realized.

During many years working in a medical setting Dr. Bandman has provided educational and supportive programs for doctors and nurses to address their own psychological and emotional reactions to caring for seriously ill and dying patients. He has observed that doctors, who by nature were drawn to their vocation because of their empathy and desire to heal, have found themselves having to repeatedly deliver “bad news.” Dr. Bandman has come to understand the importance of medical practitioners being aware of the impact of stress on their work, on themselves personally, and its influence on communication with patients in healthcare decision-making.

In 1998 Ms. Bandman, a published writer who makes sense of the world through stories, found herself unexpectedly thrust into the role of patient advocate at a regional cancer center in Vermont. Listening to patients tell their stories and hearing the words doctors used to describe a patient’s disease, Ms. Bandman observed the language differences and communication gap in the medical encounter.

Was there a role for a writer in healthcare? There had been a growing movement in medical education to incorporate the humanities into the curriculum with particular attention being paid to the link between storytelling, literature and the practice of medicine. The medical humanities, however, had yet to be translated into a practical model that documented the patient’s story of illness—in their own words—for the doctor to review and, thereby, bridge communication between the patient’s perspective and the doctor’s approach to care.

In 2002, Ms. Bandman created the role of medical humanist in day-to-day practice.  As a member of the inter-disciplinary healthcare team, she helped to bridge the communication gap by documenting the patient’s voice alongside the clinical data in the patient’s medical record.

In 1991 the late Patricia Barr, a lawyer, turned her personal experience with breast cancer to the public arena.  As a board member of the National Breast Cancer Coalition, she helped to change the world  of breast cancer in public policy, science, industry and advocacy—she believed in and fought for access to quality care, the ideals of innovative research and creating new partnerships.

Ms. Barr visited Senator Patrick Leahy’s Washington office in 1992 with a small contingent of Vermont women who had survived breast cancer.  It was that visit which led Leahy, later joined by others in Congress, to urge the Secretary of Health and Human Services to declare breast cancer a Public Health Emergency.  Leahy and Barr worked together to convince Congress that millions of dollars should be dedicated in the Defense Department’s medical research budget to combat breast cancer. Their efforts have funded nearly $1.5 billion in breast cancer research.” “Nothing like this [had] ever been done before,” Leahy recalled.

In 1998 Ms. Barr, once again, became an active patient.  “There will never be a time,” she said, “that I will not be a patient.” As a patient with advanced disease she focused on the needs of the population she represented. She opened her journals, served as a reporter and exposed her fear and vulnerability. Ms. Barr recognized the patient-doctor relationship had its own set of stresses, which were exacerbated in the care of the chronically ill. There were higher expectations and more emotional investment on the part of both patients and doctors.   Layers of uncertainty clouded every interaction. Patients had other health problems and more interactions brought opportunity for further misunderstandings. Doctor-patient conversations did not effectively address uncertainty—one of the most difficult dilemmas in the care of the chronically ill. Ms. Barr believed, “We must develop a partnership. It’s a shared sense of not knowing—but a willingness to do the best we can.”