A few months ago, I underwent month-long daily radiation therapy for breast cancer. It was hard for my frail rail-thin body. The treatment left me physically, emotionally, and mentally depleted — like nothing I had experienced before. Several months after completion, I still suffer the side effects. (I know survivors who remain affected many years down the road). I feel lucky to be alive. A large part of me is filled with deep gratitude for the advances in cancer medicine –– and for my oncology team. Another part of me, the human-centered strategy consultant, is bewildered by the gap in understanding of human needs in the radiation therapy process.
From the very first day I stepped into the radiation waiting room, and treatment room, I witnessed the void. Efficiency versus humanity. It chilled my spine. Lots of efforts had been placed into maximizing output. Less so on ensuring a conducive experience for cancer patients. Why does it have to be so dualistic? Efficiency married with humanity would produce better outcomes for both cancer patients and radiation oncology employees. (The strain was visible on both sides). On the first day of treatment, a stressed radiation therapist greeted me with: “Next time I won’t come get you. Go straight to the dressing room, put on a gown, and wait in the waiting area I’ll show you.” That’s all he said. Then left me to figure out the rest. I was stunned by the coldness of this first reception. I felt a pang rise in my chest. The waiting area was dismal. The temperature freezing. The lighting chilling. Haggard cancer patients, exposed and vulnerable, were waiting motionless in oversized gowns. Fatigued fishes in a decrepit aquarium completed the decor.
Although radiation therapy saves lives on a massive scale, the treatment process has much room for improvement. By process, I mean the way the radiation therapy is administered from first to final treatment. Existing processes place excessive stressors on already stressed cancer patients. Many of which could be preempted with a greater awareness of psychological human needs. These stressors are largely overlooked yet fundamental to understand because they represent primal barriers to human well-being and healing. They can also have repercussions on medical performance. As an example, a patient who is stressed by the process will take longer to position on the radiation machine than one who is at ease. This, in turn, can increase stress on medical staff and lower productivity.
In all truthfulness, there are growing efforts to improve the patient experience in Healthcare organizations. Some hospitals (like the one I received treatment at) have a whole department dedicated to the patient experience. While a positive endeavor, in my experience these efforts only scratch the surface of human needs. They address the low hanging fruits and fail to go deep enough to understand the root causes of patient distress.
During my month-long radiation treatment, I experienced these stressors first-hand. It took concentrated efforts to acclimate to the process and be able to somatically experience treatment as treatment — and not torture or threat. It didn’t help that the radiation suite looked like a torture museum I had visited long ago. The neat rows of radiation molds and masks (openly displayed for faster access) also added a sense of dread. Intellectually my mind was aware that I was receiving treatment, but at a primal level, my somatic bodily response didn’t reflect my intellectual knowing. As a mindfulness practitioner, I stayed attuned to my body during treatment. My body felt hijacked. The alignment process (the procedure used to position patients for the radiation beams) and breathing instructions made my body tense up. Thoughts of feeling dehumanized popped in my mind on many occasions. I had to make special requests to make the process more conducive. The technicians graciously responded, and it reduced the strain for all of us.
I wish hospitals would place more efforts into understanding the holistic human experience of cancer patients. Advanced technology and first-rate oncologists are terrific. But pairing them with processes that don’t acknowledge the full humanity of patients adds unnecessary stress on already stressed cancer patients. As a survivor, I feel extremely grateful to be alive. On the other hand, I am acutely aware that the radiation experience could be positively improved with a holistic understanding of patient needs.
I wish hospitals would place more efforts into understanding the holistic human experience of cancer patients. Advanced technology and first-rate oncologists are terrific. But pairing them with processes that don’t acknowledge the full humanity of patients adds unnecessary stress on already stressed cancer patients. As a survivor, I feel extremely grateful to be alive. As a human-centered design consultant, I am acutely aware that the radiation experience could be positively transformed with a holistic human-centered approach. Witnessing the gap with companies I worked with in the past, I developed a need-gap discovery workshop to help participants explore the customer experience from the inside out, and discover stressors they had not previously seen. I believe this workshop could lead to transformative improvements of the patient experience in healthcare settings.
An expanded version of this article was published by SAGE in the Journal of Patient Experience. Leotin, S. (2019.) An Insider View of the Cancer Radiation Experience Through the Eyes of a Cancer Patient. doi: 10.1177/2374373519832604.