A few weeks ago, an older CMAJ article re-surfaced on #medtwitter describing the illness of Alfred S. Reinhart1.
Who was this patient?
He was a Harvard medical student from the 1940s who had a history of rheumatic fever and a child, and subsequently developed rheumatic heart disease. More importantly, he had a unique understanding of the pathophysiology of his symptoms as a both a (student) doctor and a patient. He kept a detailed journal of his reflections which provide a unique perspective on this disease.
In an era before antibiotics, rheumatic fever was common and survivors lived in constant fear of delayed consequences from the infection (recurrent infection, infectious endocarditis, and heart failure). Rienhart reflects on his severe aortic insufficiency, describing the sensation of his diastolic blood pressure dropping to 0 (!) with every heart beat:
“For ten years now, I have carried a blood pressure ranging on the average of 160 systolic and 0 diastolic, a fact, which translated into physical emotions means, especially when we consider the existence of the cor bovinum of aortic insufficiency, that every ventricular systole is sensed by the patient with no effort on his part, so that I might almost facetiously say that, if I did not sense the heart beating at any time, during the past ten years, I knew I was dead. The physical discomfort of being forced to experience every ventricular systole over a period of long years is not to be underestimated, and I had often felt willing to sacrifice many things in order to feel again how it was to be able to live without feeling my heart beat.”2
Eventually, Reinhart goes on to diagnose his own subacute bacterial endocarditis (despite many residents and cardiologists not believing him) and he unfortunately succumbs to this illness before graduating medical school.
This piece resonated with me for many reasons. As doctors, we have so much to learn from the patient experience. In medical training, we are taught to spend our time on the “textbook” signs and symptoms of illness. However, most of our medical text books are written by observers of disease not by those who are going through the illness themselves. When we perform “checklist based medicine” we miss more subtle clues our patients are trying to tell us. If a symptom doesn’t fit into our checklist we are more likely to disregard it. Additionally, if we aren’t listening for it, we may miss how their illness is affecting their functioning in subtle yet important ways. Just like we miss heart murmurs that we are not looking out for.
Many of us gain this insight as physicians overtime as we go through our own medical problems or help family members navigate the health care system. I encourage you to read this article to help you gain some insight into the patient experience, especially if you haven’t (yet) been in this role yourself.
Alfred Reinhart’s experience is multifaceted, I would love to hear about what you’ve taken away from this article. Send me a message or comment below!
- Subacute bacterial endocarditis observed: the illness of Alfred S. Reinhart. Kenneth M. Flegel CMAJ 2002. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC137358/
- Weiss S. Self-observations and psychologic reactions of medical student A. S. R. to the onset and symptoms of subacute bacterial endocarditis. J Mt Sinai Hosp N Y1942;8:1079-94.