As medical students, our training often involves experiencing emotionally challenging situations. We are taught to sympathize without overstepping, to show empathy but not to embody. Despite learning about professionalism, there are some patients impossible to “leave behind in the consultation room”. Often, the most memorable encounters remind you of someone you love, or sometimes, of yourself. On a home visit I met a woman given a two-year prognosis. Against all odds, she continues to live under hospice care at home eighteen years later. Since this was my first home visit to a terminally ill patient, I was initially hesitant to ask intense questions. However, this was incredibly easy to talk to; receptive, warm, and with a light-hearted sense of humour. She is one of those people universally appreciated for a matter-of-fact, adaptable attitude. However, we were able to broach darker themes hidden beneath her incredibly strong exterior. The patient mentioned watching news-stories of parents who committed suicide and killed their children too. She honestly remarked that on her worst days, she understood it and seriously considered taking her own life. The only thing that stopped her was the desire to see her daughter grow for as long as possible, and the beautiful mother-daughter relationship throughout our interaction was evident. The fact that her child was the same age as both of us students’ home-visiting struck me. Despite the similarity in age, we had such little understanding of the illness that this patient’s daughter had grown up with. 

To try capturing this mental battle, I created a spoken word piece from the patient’s perspective as I feel that much of medical literature conveying patient experience becomes de-personalized in the form of a clinical, third-person voice. I set this to some simple piano music to highlight the stream of consciousness, utilizing a minor key to accentuate the theme of depression, and dissonant chords to mirror internal unrest. Finally, I added improvised movement to attempt to organically demonstrate some of her feelings. The coincidental progression from dim, colder lighting to a higher, warmer saturation helped display progressing emotions. The outdoor setting and background noise of birds and a child’s voice served as a tribute to this patient’s cherished moments of being pushed in her wheelchair by her daughter through Bristol’s green spaces, especially with her increasing indoor confinement due to oxygen dependency.  

We are taught that certain clinical studies measure the true burden of disease. But it is home visiting; spending over an hour with a patient in their own environment, where we start to understand what living with a chronic condition really means for the vast majority of a patient’s life, not just for the ten minutes they present in a practice.

I am so grateful that coming to medical school has allowed us to use creative expression to make sense of our patients, their lifeworld, and ourselves.