Narrative Influences & Patient Responsibilities   Leave a comment

When I attended the Undiagnosed Diseases and Inborn Errors of Metabolism division (also known as the Rare Diseases program) at NIH this past summer, there was one key aspect to the program that I found incredibly important to helping the patient.  Each patient was assigned a nurse practitioner who thoroughly got to know the patient and the patient’s health history, ultimately under the supervision of a physician.  The nurse practitioner advised on scheduling certain specialists for consultations, and followed up with the patient throughout the day to ask questions that might arise (usually from the specialists after they had viewed patient), to give important new information found during testing, and to give medical advice collected by the specialists the patient had seen.  In my case, the nurse practitioner was aided by my typed up personal medical history and family health history, which she reviewed quite thoroughly.  

On page 50 of _Altered Conditions_, Julia Epstein notes: “The twelfth edition of Cabot and Adams’ Physical Diagnosis in 1938….argued that ‘the history is the key to diagnosis’ and that ‘more errors are traceable to lack of acumen in eliciting or interpreting symptoms than have ever been caused by failure to hear a murmur, feel a mass, or take an electrocardiogram,’”

I made a personal observation during the week in-patient stay at NIH.  The supervising doctor was very prone to impress her superiors and was obviously ambitious in her career.  Her current position was merely a stepping stone in the grander scheme of her career goals.  I felt this impacted her decision-making and influenced what aspects of my narrative she would underline or dismiss.  The nurse practitioner seemed more confident and content in her career as a nurse practitioner. The pressure of impressing a superior seemed lessened and she could focus on thoroughly learning health histories and helping the patient.

In fact I found it easier to suggest medical testing or ideas to the nurse practitioner who could then relay them to the doctor.  If the supervising doctor took the suggestions and ideas as advice from the nurse practitioner, rather than direct contact with the patient, that perhaps could lessen the ‘blame game’ when presenting arguments to the lead doctor of the program. For example, “It was the nurse practitioner’s determination that the patient be consulted by an endocrinologist.” 

Would it be beneficial to both patient and doctor if it were standard procedure to have nurse practitioners, or even a separate field in medicine, directly responsible for taking down patient narrative? And could this entity within the medical community help the patient better explain their story, thus bridging gaps of understanding between patient and doctor? 

On pages 45 and 48 Epstein states, “In 1870, Alfred K. Hills took a different approach, and wrote a handbook of advice for patients who found themselves needing to communicate their symptoms in writing to a physician.”  How much of the responsibility should fall on the patient to document their narrative?  Should patient narrative be a part of the writing curriculum taught in high school, much like letter writing and essay development?  We teach the scientific method in school, why not patient narrative?  And if teaching patient narrative writing were commonplace, would doctors eventually become much more accepting to reviewing typed patient narratives without feeling threatened by the patient?

—-Genevieve

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Posted September 7, 2010 by gentyrrell in Uncategorized

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