The Yale Journal for Humanities in Medicine

The Patient As Teacher

Cynthia Pincus Russell, Ph.D.

Cynthia Pincus Russell CISW, PhD has worked in mental health in medical centers, agencies and in private practice. She has served as Health Professionals Trainer for groups on Cancer, Aids and Conscious Dying for Bernie Siegel M.D.’s nonprofit agency. As Clinical Faculty in the Department of Psychiatry at Yale Medical Center for years, she has designed in-service trainings, given them, designed research, and supervised counselors.

She runs the Ct. Institute for Psychosynthesis and Act 11 Counseling, in Stratford, CT., where “Patient as Teacher” is now housed. Co-authors were Beverly Listorti, Barbara Caporeal-Katz; Gail McCollum, and Bonnie Feuer.

 
  The ‘Patient as Teacher’ project has been underway for many years. It started when I found, by chance, a copy of a medical resident’s thesis “Jatrogenicity at a Large Medical Center in One year” on my desk.

  Being the daughter of a neurosurgeon, married to a physician, and daughter-in law of a pediatrician at the time, of course I read it cover to cover. I had been weaned on doctor’s stories!

  As the years went by, psychotherapy clients’ stories in my own career increased my sensitivity to what it can be like to go through diagnosis and treatment in any specialty, including my own. Another wake-up’ call came when my own son almost died, and was unable to speak, for two months following surgical complications.

  More recently I have heard increasing numbers of health professionals bemoan the way the various systems are overwhelming them (one example; the many pages of paperwork required now simply to transfer a patient to a nursing home- one counselor quoted the number 30!) Paper work consumes more time than ever before in the history of the professions and steals time from listening and supporting the person in the middle of it all.)

  I have worked with health professionals as clients and heard their complaints of burnout, and also encountered this as a supervisor, trainer, and in giving classes for professionals in supporting those with Cancer, Aids, and Hospice Care.

  Gathering five other concerned women professionals, we created a Think Tank.” Meeting for three years, reading both academic and general publications on our topic, and inviting speakers (chaplains, Patient Advocates, doctors, nurses, social workers) We learned all we could, from every perspective. We then designed and distributed hundreds of patient questionnaires, which were subsequently analyzed. One blind woman even sent in 3 audiotapes on her experiences following stomach stapling. We were so moved by the patients’ reactions, we have offered consultations to a number, and a video “ Patient as Teacher “ has been created. (Harley Films; Cos Cob, CT.).

  The patients’ concerns are now being matched by those of professionals. Mental health workers have testified against ‘managed care’ recently and in Connecticut have organized the Ct.Psychotherapists Guild, whose members work outside that system. In other parts of the country some professional groups are looking into unionizing. The health professionals that we interviewed and surveyed had much to say about their psychological-emotional losses over the years. One medical student told us “ I was a different person by the end of my first year of med school 

  While the primary author had won fifteen other grants, we did not apply for funding because we wanted complete freedom on this project. We are now in the process of publishing our data, and have presented both nationally and internationally at many conferences.

  Reading through our hundreds of pages of responses, one thinks How could that have happened!” and yet these things do happen, and seem to be happening even more frequently now that managed care so often pays for time spent doing tests and operating, but not talking, or checking to see how things are going.

  One family told us how their father was resuscitated, brain dead, after they had very carefully explained their wishes for D.N.R. to the emergency room staff. He was now in a nursing home for good as he had already been brain dead due to an earlier stroke.

  Another story was about the time a patient went to the hospital for her fourth baby and ran into the Ob-gyn from the first baby. She had left the group for years because it was too big a group, too impersonal, she felt. “ Hi, I’ll be right in to examine you” was the greeting. Nervously, she went and hid in the shower.

  We heard awful stories about the squealer of stomach stapling; of abortions (“ they treat you assembly-line- lots of anesthesia but not waiting for it to take effect...”; allergic reactions to local anesthesia, a wisdom tooth extraction resulting in hemorrhages and the HMO refusing to contact the dentist at home 

  These we have written up by specialty, so that we can offer them to the public, much as people now go to specialty chat rooms on-line to learn the ins and outs of ailments and procedures.

  Equally important was the “up side”. The dermatologist and surgeon, both cited as telling jokes and chatting to distract during unpleasant procedures the hospice doctor who sits down on the bed, even plays chess the hospice home care nurse who brings herbs from her own garden the Chief of Radiology who insisted on listening in on the line to help out as a frustrated caller tried for the fifth time to schedule something.
 
  Details are changing every day now- some much worse, some much better. The urgent point is the need for sensitivity for what one can avoid, and what one can improve.

  Our mission is to help health professionals avoid burnout, to reconnect with their original reasons for entering their fields, and empower patients going through diagnosis or treatment. The project can be reached at P.O.B. 1183, Stratford, CT. 06615-1183 (203) 782-9188 or (203) 377-2421 and/or on line at psynnie @ aol.com We offer consultations on all aspects of this topic, talks and workshops, are glad to share our findings, and welcome stories of all kinds.

Published: July 2, 2001