Seeing the Humanity in Neurosurgery through Qualitative Research
The room was bright, with a small window in the back. I took my seat across the table from the patient, now several months removed from experimental surgery targeting the white matter tracts underlying their* psychiatric illness. As a clinical researcher tasked with examining the patient perspective of this new procedure, I had spent hours reading about this patient’s remarkable change in their post-operative symptom severity scores. It was not until speaking with them, however, that the decades of suffering from intrusive thoughts prior to surgery became clear. For this patient, their illness had strained personal relationships and led to complete withdrawal from the outside world. Simple acts like leaving the house or taking a shower became incredibly challenging with the progression of disease.
As the patient described their experience to me, their warm smile and pleasant tone of voice belied the long history of mental anguish. It became apparent that the positive trend in scores documented in the chart carried tremendous hidden meaning. The improved score translated to days and then weeks of more time spent with family and better control of their own thoughts. Their surgery, they told me, had not been an instant cure, but rather an opportunity to better engage with therapy in a way that was making their symptoms manageable. I was in awe of their strength, grit and remarkable ability to maintain such a positive outlook while fighting to overcome this invisible disease.
*Plural used throughout to protect patient identity
Scientific research is a prerequisite for today’s medical students interested in neurosurgery. Although many students (myself included) are drawn to the lab bench or medical records, I have found unique fulfillment in the pursuit of qualitative research. Qualitative research represents a broad category of research methods assessing phenomena such as individual beliefs, experiences and behaviors that are challenging to examine through quantitative means. These methods have proven valuable in neurosurgery as tools for assessing patient’s perceptions of surgeries and disease course.1,2
Through qualitative research, I aim to capture the lived experiences of patients undergoing various neurosurgical procedures, a living example of the science of practice. Initially, my interviews were centered on perceptions of the operation itself. This focus had been sharpened after reading dozens of patient accounts and exploring the technical development of different procedures. However, through the course of many encounters, I felt my focus begin to change. Time after time, patients told me: “The procedure [itself] wasn’t a big deal…pretty easy.” Instead, most patients were far more interested in telling me about the impact of surgery upon their quality of life including pursuing education, spending time with loved ones and resuming hobbies.
Engaging in qualitative research allows students to become more in-tune with patients’ perspectives, first-hand. I have been humbled to discover that the priorities of a clinical researcher (e.g., to document the post-operative course and tolerability of a new procedure) often differ from the priorities of patients (e.g., to discuss the personal changes they have experienced as a result of the surgery). This adds a unique and vital twist to prevailing concepts in medical research that may spur patient-guided scientific inquiry. On the clinical wards, medical students have opportunities to learn from patients in a fast-paced, task-oriented environment. However, I believe that qualitative research allows students to appreciate the breadth and depth surrounding each medical encounter. In spending hours interviewing patients, without the looming thoughts of unfiled notes or accumulating assignments, I have had the privilege of immersing myself in each patient’s life, even if only for a moment.
Perhaps one of the most important lessons we can gain from science and our research endeavors as medical students is witnessing the humanity underlying medical practice. Qualitative researchers achieve this through regular self-reflection, frequent examination of our own biases, and by valuation of the expert perspective that each patient has of their own disease. Perhaps by keeping this in mind as medical students, we can begin to emulate the notion laid forth by Dr. Harvey Cushing:
“A physician is obligated to consider more than a diseased organ, more even than the whole man – he must view the man in his world.”
1. de Haan, S., et al. (2015). Effects of Deep Brain Stimulation on the Lived Experience of Obsessive-Compulsive Disorder Patients: In-Depth Interviews with 18 Patients. PLOS ONE. 10: e0135524.
2. Shih, P., et al. (2018). Leading up to saying “yes”: A qualitative study on the experience of patients with refractory epilepsy regarding presurgical investigation for resective surgery. Epilepsy & Behavior. 83: 36-43.
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