Name, age, sex, medical record number. These are the identifiers with which medical professionals in hospitals across the country initially meet their patients.
Shortly thereafter, these data points are incorporated into brief one- to two-line summaries alongside any past medical history that is pertinent to the patient’s current clinic visit or hospitalization. And it is this condensed bit of information that follows our patients throughout their tenure of care. Each member of their care team knows them by this identity regardless of whether the hospitalization is 24 hours long or 24 days long.
More often than not, beyond this brief paragraph, our patient’s true stories are lost in the hustle and bustle of the clinic and the hospital. Between intake forms, lab draws, and radiology scans, the person behind our patient gets lost. And as a health-care provider, I wish we spent more time fighting against this consistent distortion of patient identity.
On a mission to learn more about the person behind the patient, I spent a good portion of my first year of residency collecting patient stories. Armed with a blank 4x6 index card and a ballpoint pen, I asked my patients to “write something, anything, as long as it is about yourself.” When I asked my middle-aged female patient with metastatic cancer to her kidneys and lungs to tell me about herself during her hospitalization for a bloodstream infection, I was surprised to learn that she considered herself “an everyday ‘Joe,’ trying to seek the beauty of everything around [her].”
She intrigued me further with her proclaimed status as “a collector of people’s stories,” especially as I found myself doing the very same thing. Between her daily bags of intravenous fluids and her scheduled doses of antibiotics, she found the time to see the beauty of life from her small hospital room. Joy for her came in the form of visits from her family. Medical setback after medical setback did not change her end goal: a return home to be with her husband and children.
Bloodstream infections come in all shapes and sizes. In patients with end-stage diseases that require hardware placement like defibrillators and pacemakers, infections can be the beginning of the end—these lifesaving medical devices become breeding ground for bacteria that can often not be eliminated by even the most powerful antibiotics. Conversations about removal and replacement of these devices then come into play, and the risks and benefits of these procedures must be weighed ever so carefully. In the midst of trying clinical situations, sometimes providers lose sight of how priceless the connections to home and family are for our patients.
But thanks to one of my 65+-year-old patients and his ever-devoted wife, I will never forget the importance of these pillars of love. My patient survived his battle with a virulent bacterial bloodstream infection and intracardiac device extraction and replacement over the course of a month-long hospitalization. At the end of it, all he had to say to me was: “I have loved my baby for 39 years. And I will love her for 39 more.”
This theme of love resonated repeatedly in my collection of patient narratives. One of my clinic patients told me all about his “love for love,” specifically the importance of arranging his priorities “God, Family, Career and IN THAT ORDER.” Another young patient of mine who battled chronic mental health issues for years emphasized how much it “kills [him] for [his family and friends] to see [him] sick.”
It’s no surprise that patients are reflective upon their own mortality. Nothing could have been more emphatic towards this point than a simple statement made by one of my patients. In her 30s with a chronic inflammatory bowel disease, she reflected on hope for her young children: “If something ever happens to me, [I hope] that they remember just how much we all mean to one another.”
Sadly, this type of love has cocooned not all of my patients. In fact, one of my most talkative clinic patients left me baffled with these words about himself: “I don’t like to talk about myself or write about myself. I make my choices and take my chances. I try to follow the rules and hurt no one. I am basically a loner.”
In a world where many of us can barely make it through an average day without complaining about poor service, bad weather, horrible traffic, or any other focus of minute irritation, my patient in his 20s with sickle cell disease praised the care he was receiving at his local county hospital for yet another pain crisis. And in the face of his incurable disease, he was planning his future: His notecard told me about his goal to purchase a home before his next birthday.
In a medical environment where increased focus is placed on the patient “experience” and “satisfaction,” just how much do we know and understand our patients? As much as I abhor the push-and-pull that hospitals often do to win over patients—much like hotels win over prospective guests—these surveys have found that satisfaction actually depends more heavily on hospital staff than hospital facilities.
Most medical professionals could tell you about the blood counts and electrolyte abnormalities of their patients within seconds, but what about the life stories of the patients behind the numbers? Very few of us can say much about the personal experiences of our patients, much less what motivates our patients to fight for their health. To expect a physician to know the driving forces behind all of our patient’s fears, worries, and expectations is unfeasible, and frankly, impossible given the demands placed on physicians today. That being said, it is fair to say that we should at least try to learn a little bit more about the people we see as patients every day.
With a few simple sentences, these patients opened my eyes to their worlds beyond the hospital. These small, albeit powerful, connections to my patients help me in the practice of medicine every day. Because everyone has a story to tell, and this context can make all the difference.
The above examples have been de-identified with age, gender, and past medical history modified to be within HIPAA compliance; however, the stories are reflected verbatim as they were collected.
