Narrative Medicine and Healing the Healer.
by Alya Ahmad, MD Pediatric Hospitalist
Narrative medicine (NM)? I have heard of that, what is it? I often get asked this question. As a master’s student of Narrative Medicine, I am still trying to hone in on the best response to that question.For many, NM is not novel. We have watched movies or read books of doctors helping, listening, or learning from patients as they wrestle with their illness.
Many writers, like William Carlos Williams, Abraham Varghese, or Rita Charon, have authored stories that convey the art of healing. In Rana Awdish’s “In Shock”, a physician chronicles her own journey of becoming a patient in her last years of training. As the roles reverse, the fractured disparities of doctor-patient interactions become real. She calls upon the need for doctors to be present, “bearing witness to the patient’s pain”. Just like an artist, a clinician should train “to see the negative space on a canvas…
The healing potential of medical knowledge is magical. It is also a lie. Medicine cannot heal in a vacuum, it requires connection…”The alliance we make with patients goes beyond what providers opinionate with just diagnosis, treatment, and plans. Caring for patients is fostered with attentiveness.
While working overseas in the Middle East as a hospitalist in an academic training pediatric hospital, I was rounding in the hospital on a 5 day old newborn baby admitted for a complicated congenital esophageal atresia. This congenital defect meant he had a serious medical concerns and would require many surgeries and feeding challenges.I breezed into the patient’s hospital room. I glanced at the neonate and noted that this baby boy had features of Down Syndrome (DS). We ordered confirmatory genetic testing.Days later with the positive results, we told the Bedouin mother, at the infants bedside, that her last son of 9 children has Down Syndrome. Although illiterate, she immediately retorted with “Is he a Mongoloid?” In the West, the term Mongoloid is antiquated and offensive yet in the Middle East, it remains a commonly used term to how DS is recognized.After his discharge, I continued to monitor his pediatric care in my clinic. At each visit, the mother persistently quizzed me about his diagnosis. Each time, I would detail his genetic testing, display pictures, diagrams, and the karyotype studies to assure her the accuracy of his condition. Yet, she remained unimpressed with my exhaustive details.
It was her 5th visit to the clinic, and her recurring interrogation about his diagnosis continued. Ready to regurgitate my medical jargon, I looked into her charcoal, colored eyes. I paused for a moment. I heeded to her pale constrained face, her furrowed frown, and tense pursed lips- as though she was still angry about this diagnosis.In that instance, I sensed what she wasn’t asking and what she had been wrangling with.
I said. “Mamma, What difference does it make what his diagnosis is? He is your child, your son. He has beautiful brown eyes, soft skin, and a gentle gurgled smile, like an angel. You love him; care for him the same if not more. His having Down Syndrome, a disorder, a genetic condition, does not change that.”
She glared at me. Then, blinking quickly her eyes filled, as tears strolled softly down her face. She wept and I wept with her, but these were tears of joy.