So what is Narrative Medicine, and how can it help in advocacy? Continuing from yesterday’s post, I want to explore the communication gap between medical professionals and patients or caregivers. Unfortunately, there are many cases where a patient or caregiver is afraid to speak up or not sure how to speak with a medical professional. They may feel ignored or mistreated in some way. This is not always the professionals fault. In fact, the burden is often carried equally due to miscommunication, lack of knowledge, or because of other issues.
In my experience as a parent with two sick children. I have had to be a strong advocate for them. There were many instances where I was ignored because the professional did not feel I knew or understood my child’s condition. In fact, my daughter’s heart condition required extremely low oxygen saturation between her first and second surgery. If her oxygen was turned up, it could flood her lungs and cause serious problems. One nurse came into her hospital room and attempted to turn up her oxygen when she saw how low her sats were, and I had to assert myself and my knowledge. She did not want to listen and I demanded she go read my daughter’s chart while I turned the oxygen back down. Needless to say, she did apologize and a note was put on the oxygen control to warn anyone else.
I had some other problems with incorrect medication dosage, but for the most part, the professionals I worked with were incredible. In fact, at Denver Children’s Hospital where 3/4 of my daughter’s hospitalizations were, we had doctors who listened and stood by us. My daughter’s cardiologist always remembered her and us, and that personal touch made me feel like he saw her for the little girl she was, not just a patient. This is not always the case. Many people have different experiences. Professionals are pushed harder to get patients in and out as quickly as possible. Technologies are introduced that make fields a drop down box and tale the personal storytelling out of patient care. This is where patients begin to feel alienated in a sterile environment and professionals feel analytical instead of connected. This is why narrative medicine can help.
Columbia University is the pioneer of the narrative Medicine program, and I highly recommend a visit to their site. The work they do is incredible and it was headed by Rita Charon. You can watch her YouTube video below.
In my own Narrative Medicine class with Gillian Pidcock, I learned a great deal about the process and how beneficial it can be for various people. As a person who wishes to be an advocate and a writer who helps parents and caregivers with sick family members, I see how this process can benefit me. In health advocacy, often stories of trauma are held onto. We keep these stories in when they need to be born into the world. If we can help our patients find a way to express what ails them through writing their narrative, we can lessen the heavy load they bear. If we can help medical professionals let go of the clinical side of their job and connect to stories where they were challenged by a situation or where they felt the humanity in what they do, we can help professionals connect to their patients a little more. We can also help people let go of the stress these stories contain. Narrative Medicine can benefit patients, caregivers, family members, professionals, and anyone else who works in this field and more.
As an advocate, think about the ways narrative can spread. If the medical field can benefit, so can social work, law enforcement, psychology, and so much more. As humans, we want to open up, share our stories. It is natural and beneficial to do so. Please share any comments you may have on this important subject.