- Addressing the Cancer Burden Through Equal Distribution of Clinical Trial Opportunities to Rural Settings
Early in my career as an oncology nurse, I struggled with the obvious, yet rarely discussed, disparity present in rural Midwest communities surrounding access to innovative treatment options for cancer patients. While working at the bedside, various scenarios presented that prompted me to begin wondering about resource allocation, such as the lack of a bone marrow transplant unit or specialized oncologic surgeon. However, my frustration grew stronger when I transitioned to the role of clinical research coordinator and recognized the lack of clinical trial (CT) options available within our community-based cancer center. In working with patients who had failed initial treatment for their cancer and were not eligible for on-site CT’s, the enormous burden of deciding whether to travel for an additional CT option often arose in discussing next steps for treatment. Observing the dynamics involved in making such a decision shed light on the unnecessarily cruel position patients often face. Financial, social, mental, and emotional costs are high in situations requiring cancer patients and their families to travel and temporarily relocate for treatment. While patient autonomy was not technically diminished, situational influences presented a likely decisional conflict. Observing these scenarios produced personal feelings akin to minor moral distress.
So I began to really ask myself, why weren’t more state-of-the-art trials available within our community? Surely, patients would appreciate having novel opportunities close to home, right? Likewise, our physicians want to provide advanced treatment options for all patients, correct? Most definitely, the institution understands the importance of advancing scientific discovery and clinical care? What was the barrier then? As with many questions, the underlying reasons are complex, variable, and require diligent analysis and continued interrogation.
In further studying biomedical ethics while finishing a graduate program, it became clear that the situation was one requiring a thoughtful look at the balance of distributive justice. While my conclusion may seem simple, the intellectual process required for me to arrive there was anything but. Throughout my studies, I wrestled with comprehending the elements and theories contained within the field of biomedical ethics and subsequent connections to real-world application. There were many hours spent jotting notes that I would later circle back to, drawing arrows between ideas to ensure I could follow my own thoughts about how it was all intertwined. I spent time visiting with mentors and fellow ethicists, revisiting my initial reactions and questioning my logic from different vantage points. [End Page E5] I allowed it all time to simmer and stew. During this time of passive, but attentive, processing, I recognized the incredible value the early years of my career as a bedside oncology nurse had furnished.
I started my nursing career in my early twenties and soon became aware of much about the world that I had never experienced or consciously attempted to digest in a cognitive way. Working on the Medical/Oncology Unit, I often cared for patients at the end-of-life, at the outset of a devastating diagnosis, or during times of complications. Witnessing the suffering, human reactions to illness and contributing factors to each patient’s situation started to shape my understanding and perception of the world but more importantly provided me with the ability to recognize my passion—making things better for the next patient. I knew we could do better and we should do better, but how? I look back now and “see” the amazing interconnections (conscious and unconscious) that led me from one role to another. The drive to continue making it better for the next patient paved the path from the bedside to research, and eventually to a graduate degree program with a focus in public health and a concentration in ethics and health policy.
When I pushed a level deeper, evaluating both my internal philosophic discussion and the practical encounters I had been fortunate to experience, I further solidified my conclusion—to make it better, we have to make it better for everyone, and everyone should have the opportunity to contribute. Without equal distribution of trial options across the nation’s geography, patients residing within a...