I can say with full confidence that the Pathos Project was among the most important and impactful courses I have taken thus far at Notre Dame. Organic chemistry and physics and cell biology are all definitely important to prepare for a career as a physician and to understand the physical basis behind diseases and illnesses, but often in those courses, it is all too easy to lose sight of the main focus of medicine – healing people. The physical dimension is definitely a primary part of healing, but the person can all too easily be lost in the process of medicine if the physical or biological aspect is all that is addressed. In being with someone who is suffering, a physician has the opportunity to come to know and treat the patient as a whole person.
I chose to enroll in the Pathos Project after my experience this summer on a Summer Service Learning Program through the Center for Social Concerns. For two months, I lived in the Hospital Hospitality House of Southwest Michigan with patients and families, and I volunteered daily at the hospital in the Emergency Department and shadowed in the Pediatric Intensive Care Unit. What surprised me most this summer was the intimate relationships I formed with the people with whom I interacted. Whether at the hospital or at the House, I had the privilege of being present with people at such a vulnerable time in their lives, and this is one of the main reasons that reinforced for me why I want to be a physician. In the PICU, I listened to the heartbeat of Anika, a four-month-old baby with a chromosomal deletion linked up to more tubes than I could count. I was present with Nick, a young boy whose family had to make the decision to remove him from life support. At the House, I encountered Delilah, an older woman with lung cancer eating her up inside. I played with James, a little boy who had a brother in the hospital, a mother filling out Habitat for Humanity forms, and a father who was rarely present because he spent time trying to earn money for the family at yard sales. Each and every one of these people had a story to tell, and I saw so much of their stories reflected in what I learned throughout the Pathos Project.
My view of Anika, the baby with the chromosomal deletion, was initially seeing her as simply a bundle of tubes, with machines breathing for her and nutrients streaming into her. How is this a life? I thought to myself. Why are we prolonging this? One of the doctors even commented, “We have gone beyond the natural course of things.” This is how I perceived the situation as the weeks went by. However, one day, something was different – Anika’s mother was present as we rounded on her. In that precise moment, in seeing a baby with her mother, my entire perspective of Anika shifted. Instead of viewing her as a bundle of tubes, I saw her as someone’s daughter. I understood that the situation was so much more complex and multifaceted than a black-and-white approach could allow. There was a person behind all the medical equipment, and no matter how young or fragile she was, she was a human life, and that should weigh heavily into the decision of how to treat her and care for her.
Each night when I returned to the House from the hospital, I sat around the dinner table with Delilah, the older woman with lung cancer. What amazed me was how much I got to know her – she told me endless stories about her childhood, her family, her hopes, and her fears and concerns. I came to know her as Delilah, not just as a patient with a disease. This is something that stands out to me in today’s healthcare system and that I grappled with during the Pathos Project. How do we go from referring to someone as “fifty-five-year-old male with chest pain” to “Joseph Smith”? We can’t sacrifice the practicality of identifying the patient’s illness, but we have to remember that their illness does not define them – a patient is a person with a disease. They are so much more than what is ailing them; that is only a small fraction of their story and is not who they are. Delilah was not just a woman with lung cancer – she was a mother, a strong-willed spirit, a loving soul, a passionate story-teller. Lung cancer was simply a part of this story – the patient is not their disease. The patient is a person who is reaching out for help in a time of suffering, and it is an immense responsibility to be present with someone who is going through such a vulnerable time in their life.
By shifting the perspective with regards to how physicians first view a patient, patients can be treated more holistically and can better be understood as people. If we see them as a disease first – “sixty-year-old-female with lung cancer” – then that will color how we continue treat them, even if the impact is only subliminal. However, if we see them as a person first – “Delilah, storyteller and mother of two” – and then shift to the disease, we can better accomplish the goal of medicine that is healing persons. While this order may not always be practical, such as in emergency situations, it is a concept that has been on my mind throughout the Pathos Project and that I think is of significant importance for our healthcare system today. Several psychological studies show the critical effects of framing, the concept that how a situation is worded or presented affects how we perceive it, how we solve problems related to it, and how we make decisions about it. By changing the order in which we frame patients – people first, and then the disease – we can better address their needs as a whole person.
Nicholas, the young boy who was withdrawn from life support, was easily the most difficult encounter that I experienced this summer, but his story tied in so strongly to what we discussed in the Pathos Project. The way his family dealt with his death was absolutely incredible – they handled it with such grace and dignity. Furthermore, the way the physicians approached it modeled for me exactly how I want to be when I become a physician. When we entered the room for rounds, Nick’s family members were all joining hands and had just begun to sing a spiritual song. Rather than saying anything, we simply stood silently in the room as they sang – we were present with Nick and his family. This reflected for me the importance and meaning that silence and presence can carry. In medicine, we often think that we are expected to have all of the answers or that we have to fill the space with words and solutions. However, so much of what we do is not in what is said but in what is communicated through presence and understanding.
I noticed a pattern of concentric circles around his hospital bed – the physicians and care team forming the outermost circle, then grandparents and aunts and uncles, then his parents, and finally Nick himself. Nick's mother opened up and talked about what an amazing person Nick was – his love of reading, his kindness towards others, his tennis skills, and his overwhelming joy. One of the physicians was even vulnerable with the family and shared how he lost his own son to cancer many years ago. This exchange of personal stories is what stood out to me. In that moment, it wasn’t about the biology of Nick’s condition – it was about the person who he was, and this allowed the family to enter a more holistic healing process. This reminded me of our spirituality session in the Pathos Project, in which we emphasized that in medicine, you’re not just treating a disease – you’re treating a person, and that includes every aspect of them. “To heal” comes from the root meaning “to make whole,” and this movement of the mind, heart, and soul to things that are of value is critically important. Without attending to the spiritual aspect, you might miss a sense of the major problem. Often, we may be afraid to talk about the spiritual issues or not know how to go about them, but there is something missing if you only focus on the clinical; the pathophysiological; the science, diagnosis, and treatment.
It is all too easy to compartmentalize, to biomedically reduce a patient to fluids, temperature, antibiotics, organs, and medication. While biomedical reductionism is necessary and helpful for understanding and addressing physical illness, it is important that in taking the patient apart, we don’t forget to put the person back together. In maintaining an emotional distance from the patient, it may seem like this buffer serves as protection on both ends, but in reality, this simply puts up a barrier to full healing. If the physician is instead present with the patient, if they take the time to sit down with them, inquire about their goals and expectations, and ask what they can do for them, it becomes easier to get a more complete sense of who the patient is and through this, to understand how one can help them heal. To meet the patient where they are and to make it a priority to discover what is important to them should be at the forefront of any patient-physician relationship. It is also important to recognize that physicians can’t make everything perfect for people. We can’t tie death or illness in a bow – it’s messy. We can’t control every aspect of someone’s disease, but we can still do everything within reason and make it better for the person we are treating through addressing them and being present with them on the level of person-to-person.
It wasn’t until the last day of the Pathos Project that we were asked what “pathos” means. We all looked around at each other, sheepish that we didn’t even know the definition of the title of the course. Then, I suddenly connected the dots. “Suffering,” I answered. “Pathos means suffering.” The entire course had focused on how we treat people experiencing illness and how we are present with those who are suffering. In the simple act of being with someone at such a vulnerable time in their life, a physician has the unique responsibility to be present with a person and to help them heal.
*Patient names and details were altered for patient confidentiality.