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Lost to Follow-up

Nutt, Cameron T. MD

doi: 10.1097/ACM.0000000000002966
Teaching and Learning Moments
Free

C.T. Nutt is resident physician in internal medicine, Brigham and Women’s Hospital, Boston, Massachusetts; email: ctnutt@bwh.harvard.edu; Twitter: @cameronnutt.

Author’s Note: The name and identifying information in this essay have been changed to protect the identity of the individual described.

An Academic Medicine Podcast episode featuring this article is available wherever you get your podcasts.

My high school English teacher used to mark up any assignment that relied too heavily on the passive voice. I often took umbrage, and likely still would if she graded my clinical notes these days because every few weeks I find myself typing out the phrase “The patient was lost to follow-up.”

As I began my final year of medical school, a chance encounter with a more recent educator offered a remedial lesson to improve both my diction and my clinical practice.

Jaime was in his late 40s when he suffered an unprovoked venous thromboembolism, leading to bilateral pulmonary emboli and his first-ever hospitalization. I met him at his follow-up hematology visit, where he described the events of the previous summer as the scariest days of his life. In addition to reinforcing my understanding of Virchow’s triad, caring for Jaime would teach me why physicians’ commitments to our patients cannot end at the clinic door.

At the end of the appointment, our team recommended that Jaime continue the direct oral anticoagulant that he had been taking—indefinitely, in fact. I soon transitioned to another rotation but looked up his chart after the date of his next clinic visit to see that he had canceled it. I didn’t make much of this, assuming that Jaime would reschedule.

Fifteen months later, I walked out of the same building and hastily took out my phone to request a ride. An Uber driver pulled right up, and as he began to skillfully navigate Boston’s tortuous rush-hour streets, I asked how his day had been going.

“Honestly, not great,” he said. From his tone, I believed him. “You just can’t get ahead in this job. And with all this sitting in the car, I keep worrying that I’m going to get another blood clot.”

I looked at the rearview mirror and caught the driver’s eye. It was, of course, Jaime, and I reintroduced myself. After a flash of recognition, he shared his story.

Shortly after our first meeting, Jaime lost his job and his insurance. Proud and independent, he sought new work while purchasing his rivaroxaban out of pocket for as long as he could. He attempted to self-enroll in Medicaid but gave up after learning of an application fee and canceled his appointment due to fear of co-payments.

As the job search dragged on, he started driving for Uber, but those earnings barely covered expenses, and he described impossible choices between meeting basic needs and investing in his health. Jaime hadn’t taken a dose of anticoagulant medication in more than 6 months. He felt trapped.

“The patient was lost to follow-up,” I might have documented in his record had I been seated at my hospital workstation.

Although Jaime still had every intention of trying to reengage in care, his efforts to do so came to feel more and more like navigating a maze, with new structural barriers at every turn.

My intervention, enabled only by luck, was a small one. I validated his frustrations and reassured him that his doctors would not allow co-payments to keep him from essential care. With his permission, I reconnected him with his care team, and one phone call with a practice social worker would set Jaime on his way to regaining health insurance, with his coagulation cascade dammed up once again.

There is plenty of discussion these days about the need to ensure that doctors are practicing at the top of our licenses, yet ordering an Uber that day may have been the single most useful thing I did for a patient during my final year of medical school.

Jaime taught me that missed visits are important data points, rather than the lack thereof. They suggest that a patient could be struggling to contend with poverty, housing insecurity, immigration status concerns, domestic violence, immobility, untreated mental illness, or prior experiences facing racism when seeking care. While these forces may not be visible through the electronic medical record, they pose powerful threats to good health. Their effects warrant prompt diagnosis and an effective assessment and plan.

In addition to his eponymous triad, Virchow also wrote that “physicians are the natural attorneys of the poor, and social problems fall largely within their jurisdiction.”1 The next time one of my patients misses an appointment, I hope I’ll pick up the phone and follow up.

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References

1. Ackerknecht EH. Rudolph Virchow: Doctor, Statesman, Anthropologist. 1953.Madison, WI: University of Wisconsin Press.
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