Lost to Follow Up

By: Laura Spatafora (c2020)

The first thing that struck me about Anna was her age; she was only 28 years old, but she had the longest chart and medication list of all the patients that we’d seen in clinic that day, all of whom were also much older than her. I remember thinking to myself, she’s too young to be here.

I met Anna two years ago. She was one of the first patients I saw as a first year medical student. Her story has stuck with me through the last two years.

I sat with the senior resident as the attending physician, we’ll call her “Dr. Ferrous”, filled us in on Anna’s medical history before we went to meet her. Dr. Ferrous explained that Anna is a refugee from Sudan who suffers from end-stage renal disease secondary to post-renal obstruction from uterine prolapse after childbirth. She is currently on hemodialysis. She is visiting the hematology clinic for her first visit in over 6 months for pancytopenia secondary to splenomegaly, which Dr. Ferrous explained stems from her Schistosomiasis, hepatitis C and cirrhosis. Furiously, I try to scribble down all of the pertinent patient information, adding question marks next to words I don’t know …schistosomiasis?, portal hypertension?… but as I scribble on my folded piece of paper, all I can think of is how scared I would be to be forced to leave my home and country because I was unsafe, and how difficult it must be to suffer from so many health concerns at such a young age. As a medical student and hypochondriac, I regularly worry that my nonspecific aches and pains might be alluding to serious disease. I felt a rising sense of frustration and discomfort as I thought about all of the very real diseases that Anna is managing.

The resident stands up and asks if I’m ready to see the patient with him. I’ve never been more anxious to see a patient. I nod. As the resident and I enter the patient’s room, I see a small woman with a tired face and yellow eyes. She wears a long flowing skirt with blue flowers. Her arms are skin and bones covered by a sweater that is pulled tight over her swollen belly. I can’t believe that she’s only 28, she looks much older. Sitting next to her is a kind-looking man who introduces himself as Anna’s friend and interpreter. Luckily, the resident also speaks Arabic. The three of them begin conversing as I sit on an extra stool in the corner of the room. I can’t understand the conversation, so instead I scrutinize the speed and intonation of the voices, and I try to interpret Anna’s body language to understand how she is feeling. This must be how it feels for her every day, not understanding what people are saying around her. Anna looks very tired, the lines on her forehead describe a constant pain, and she speaks quite slowly and softly, often deferring to her interpreter to answer her questions for her. As we perform our physical examination, the resident helps me palpate Anna’s spleen, which is so enlarged it extends all the way across her abdomen to her pelvic floor. She winces with each exhalation. I feel grateful for the rare learning opportunity. I also feel a pang of guilt in my stomach; who am I to benefit from her suffering?

After we reconvene with Dr. Ferrous, the resident explains that it appears Anna’s hematological problems do stem from her liver and renal issues, and there are no pharmacologic interventions that we can offer her. To make matters worse, she was not provided with adequate instructions for her follow up appointments with her nephrologist and hepatologist, and consequently those appointments were cancelled. Why weren’t they rescheduled, I wonder. This is where I first heard the term “lost to follow up”. Dr. Ferrous explained to me that Anna’s case is one of those situations as a specialist where, although we may not be able to offer her medical interventions, we may have a more favourable impact on her outcome by advocating for her. I sat with Dr. Ferrous as she wrote letters to and called Anna’s other specialists, strongly encouraging them to take Anna’s condition more seriously and to reschedule her appointments. We discussed some of the barriers that were preventing her from actually showing up to her appointments, including her language differences, mobility issues, and financial constraints making accessing reliable transportation difficult. Afterwards, Dr. Ferrous set up a follow up appointment with Anna to make sure that she had heard from her other doctors.

My experience with Anna affected my perspective as a future physician profoundly. This was my first exposure to a patient who, through no fault of her own, had fallen through the cracks of patient care and who, despite being followed by almost a dozen physicians on paper, was actually receiving only a fraction of the care she needed. I was equally shocked by this as I was impressed by the way Dr. Ferrous took on a level of responsibility for this patient that extends beyond her own role as a hematologist. If more physicians approached their scope of role as Dr. Ferrous does, I feel we would hear of fewer such stories as Anna’s. I harken back to my undergraduate Psychology courses, and the term diffusion of responsibility comes to mind. The more that a patient’s care is divided amongst multiple pathologies and care providers, the easier it can be for communication breakdown to occur. Identifying who is most “responsible” for the patient becomes unclear, and ultimately the patient can suffer from lack of coordinated care. This is especially apparent for patients like Anna, who aren’t capable of advocating for themselves because of multiple barriers including language, socioeconomic status, transportation access, and education.

Now, two years later, as a senior year medical student, Anna’s story serves as a reminder to me of my accountability to practice medicine with sensitivity to the intersecting sociocultural factors that may be just as important to patient care as a past medical history. She has helped me to understand how the social determinants of health play a role in the barriers that can prevent patients from accessing optimum care and follow up. I still think of Anna often and wonder how she is doing now. I pause now, every time a patient misses a clinic visit, and I ask myself what I can do to help them make it to their next visit. In medical school we spend a lot of time comparing specialties and trying to decide on our futures –  but regardless of what area of medicine we practice, we all have a role in trying to bridge gaps in care to prevent our patients from falling between the proverbial cracks.

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