In a Patient’s Own Words

The importance of recognizing a patient’s perspective in weighing healthcare decisions is gaining more traction, evidenced by an increasing number of articles in medical journals that refer to the “patient’s voice” in describing how one’s personal experience of illness influences treatment choices and setting goals of care. There’s also a movement called “Narrative Medicine,” which encourages healthcare providers to listen carefully to the patient’s story in helping to better understand the circumstances in which illness is occurring. And, I’m sure we’ve all noticed how it’s become popular for healthcare organizations to use slogans that declare they offer “patient-centered care.”


So, what does this all mean to a patient? Well, I’ll never forget what a patient said to me when I introduced myself as a medical humanist at the cancer center in Bennington, VT. She got right to the point and asked, “what’s in this for me?”


To answer that question, I described my role as someone who listens to and documents the patient’s perspective of illness– in their own words– for the medical chart. I told her that my medical humanist’s note would state what she understood about her diagnosis, prognosis, treatment plan and how she and loved ones were coping with her illness. The note also included a question about what she would have liked to ask. I went on to explain that after reviewing my note the doctor would have an opportunity to address concerns and misunderstandings. In effect, I was bridging communication between doctor and patient, which could be helpful in understanding her health status and in making decisions about care. After my explanation, the patient confided, “I think that could be helpful.”


The use of terms like patient’s perspective, patient’s voice and patient-centered care reminded me of “Narrative-Based Medicine: Potential, Pitfalls and Practice,” an article published in the Permanente Journal (Kalitzkus & Matthiessen, Winter 2009), which explored “possibilities and limitations of a narrative approach” in clinical practice. The authors note, “narratives derived from medical practice and patient encounters are a source of knowledge for evidence, beyond the gold standard of randomized controlled trials of evidence- based medicine.”


Yet, there are healthcare providers would say that all that matters is medical science and understanding a patient’s experience of illness is not necessary for providing effective clinical care. Others recognize that listening to a patient’s story offers clinical and personal information that could help with implementing a treatment plan tailored to that person’s goals of care.


In the Permanente Journal article the authors, in describing my narrative approach, state, “Ms. Bandman, a writer who understands the impact of words and how language shapes experience, does this, for example, by helping patients find words for their experience and include them in the medical record: The Medical Humanist’s Note documented the patient’s story in their own words and was filed alongside the clinical record which made for the whole story.”


My comments in the article are based upon years of fieldwork at a cancer center. During that time, I witnessed how a doctor’s strict adherence to protocols can outweigh what patients may prefer. Sadly, this breakdown in communication can lead to regrets about treatment choices. I have also observed how paying attention to a patient’s perspective, especially voiced in their own words, can help healthcare providers understand and support decisions that align with their values and goals of care.


An emphasis on narrative medicine is a good thing as long as a patient’s perspective is not interpreted in medical language. To make sure that patients are understood, it can be helpful to document the patient’s own words in the medical record. As Dr. William Donnelly said, “Getting the voice of the patient into the history of present illness will not only help to right the medical record but also help to right the relationship of physician and patient.”