Alexis Spangler - Patient Centered Ethics: Pathography

Jan 21, 2022 at 08:43 pm by pj


     Throughout my rotations during my third year of medical school, I met a variety of patients that made an impact on me. It is interesting to think that each of these encounters will influence the way I practice as a physician in the future. During my longitudinal family medicine rotation, I followed with patients through multiple visits throughout the year. One patient in particular had a diagnosis of muscular dystrophy. I remember her being wheeled in her wheelchair into the clinic during her first visit. I had studied flashcards from my first and second year describing her condition. However, studying diseases in textbooks is not nearly as memorable as her personal experience with the debilitating disease.

      She was only in her forties and I remember her hair being done nicely, make up in place, and remnants of muscles from an active individual. Her type of Muscular Dystrophy had a later onset, not fully affecting her until her mid-twenties. She explained how a relative had Muscular Dystrophy and became tearful when telling me details about how she watched it slowly progress as he aged. She went on to explain how hard it was to watch her own body go through the same hardships she had watched her relative go through. She said she felt betrayed by her own body. I felt a twinge of guilt when hearing her say this because many of the simple skills she longs for, like walking and caring for herself, I take for granted daily. I also realized it is impossible to fully understand the feeling of losing control of your own body without going through it yourself, but I appreciated her giving me a glimpse into her life so I could try to grasp how she feels.

      She also told me about how much she appreciated her family taking care of her as her disease progressed, much like she did her relative. Her husband was in the medical field and went above and beyond to take her on many of the adventures she had always enjoyed. She told me about a recent kayaking and snorkeling trip she had taken in Hawaii. She explained she had always been active and loved the outdoors. One of her initial goals when her symptoms were first beginning was to remain as active as she could. Her husband even made her a homemade standing wheelchair so she could try to have a sense of normalcy when moving around her home.

      However, she told me as her disease has progressed in the past year she noticed she was slowly becoming more fatigued with activities she could easily do years before. Her husband was pushing her to be active and just wanted to be helpful, which she admired about him. However, more recently she felt guilty because she could not do all the activities he wanted to do. During their Hawaii trip she wanted to lay on the beach but did not want to feel like a burden and ruin his trip because he enjoyed kayaking and snorkeling. Her guilt was consuming her and she did not want to take away from his life too.

      I had to remind her that everything she was feeling was completely normal. As her physical limitations change, she has to be understanding of her body’s capabilities and recognize what she can do. She also has to let her husband know these changes. The family physician I worked with even offered to have a meeting with both of them to explain her limitations to her husband if she needed it. She fully appreciated our offers but was confident that her husband would understand, it was just up to herself to find the courage to tell him. I could tell her internal conflict between her mind and her body limitations had been affecting her for some time and she seemed relieved to have finally admitted it.

      Overall, this encounter reminded me how important it is to view a patient as a person, not just a diagnosis. With a medical student’s love for medicine, it is impossible to not be fascinated by rare and interesting diagnoses, but we have to remember the implications of these diseases and how they mentally and physically affect the patient. During the encounter with my patient, I think she found relief in explaining some of her frustrations with her disease out loud to someone else. This visit also gave me a chance to help her justify that she has physical limitations and to remind her that this does not make her a weaker person. Although my patient had a bad diagnosis, this mindset can be applied to a wide variety of patients. It is important to give each patient an appropriate amount of time to express all their concerns and then reassure and give them attainable goals. This can help a patient both mentally and physically and is key to forming a strong patient-physician relationship.











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