Humanistic Qualities in End-of-Life Care: Lessons from The Diving Bell and the Butterfly: A Memoir of Life in Death–Required Reading in an End-of-Life Care Curriculum for Internal Medicine Residents

Document Type

Article

Publication Date

12-1-1999

Description

Objective: Reading a literary account of a terminal illness to develop humanistic qualities and attitudes for effective end-of-life care. Method: The Diving Bell and the Butterfly: A Memoir of Life in Death by Jean-Dominique Bauby is an autobiographical account of Mr. Bauby's experiences in the locked-in state after he suffered a brain stem stroke at age 43. Each resident was given a copy of this paperback to read over 4 weeks. Interns (PGY-1) were on a 4-week oncology ward rotation, and all junior and senior residents (PGY-2 and PGY-3) were on elective rotations during this period. Residents were instructed to mark their favorite passages of the book, to be prepared to read aloud such passages in small-group sessions, and to explain why they chose the specific passage. Attendance was mandatory, and residents were asked to complete a questionnaire at the end of the small-group discussion. Results: Eighteen PGY-ls and 30 PGY-2/3s completed the curriculum. Seventeen of 18 PGY-ls read the entire book, and all 30 PGY-2/3s read the book from cover to cover. Only 3 of 18 PGY-1 residents felt that the task of reading this book interfered with their work. More than 90% of the residents felt that reading the book clearly improved their attitudes toward the care of the terminally ill patient. Lessons learned from the book included all the humanistic qualities important in caring for the terminally ill and severely disabled. Conclusion: Well-chosen narratives of literature can be a powerful tool to learn attitudes and humanistic qualities in the care of the terminally ill.

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