By Dr. Zijian Chen
When Gov. Andrew Cuomo shut down New York City in March 2020, we knew little about treating COVID-19. While treatment has improved considerably, most dialogue has focused on two types of patients—those with severe, even lethal illness, and those with milder symptoms. Yet there is a third category of patients: those suffering from long COVID, whose symptoms linger for an extended period or mysteriously reappear months after their original infection.
Clinicians recognized the existence of these long COVID patients early in the pandemic. May 13, 2022 marked the two-year anniversary of the opening of the Mount Sinai Center for Post-COVID Care in New York City, a first-of-its-kind unit in the U.S. Since then, long COVID has emerged as one of the biggest but least-addressed medical concerns. Anywhere from 10% to 30% of those who contracted COVID-19 suffer chronic aftereffects, some lasting many months after the initial diagnosis. These patients face increased risk of thromboembolic disease, cardiovascular complications, hepatic and renal impairment, and systemic inflammatory response syndrome.
While most of the U.S. has returned to “normal” (or at least a new version of it), these long COVID sufferers, through no fault of their own, have been left behind. They may have avoided the most serious outcomes of COVID-19 initially but are missing out on the return to life as they knew it. And while these patients struggle, so do their health-care providers—many of whom suffer from long COVID themselves after fighting on the front line as intensive care units and morgues exceeded capacity.
Long COVID presents varying and unpredictable symptoms and has no known cure, so with very little information, health-care providers are facing an uphill battle when it comes to providing adequate care to these patients. The absence of a standard set of interventions leaves caregivers vulnerable to liability risks stemming from misdiagnoses—either by not recognizing that the patient has long COVID or by diagnosing long COVID when, in fact, the patient has another serious disease.
Medical errors do happen; in fact, diagnostic error is the No. 1 cause of serious harm, making it the top concern for preventing patient injury. In light of these findings, patients need to present clinicians with the full range of symptoms and ask for comprehensive diagnostic tests to be run in order to identify if it’s long COVID or another ailment.
In return, health-care providers need to bring experts from varying fields together. Forming a strong multidisciplinary care team, communicating clearly and often with patients, keeping detailed chart notes, conducting exploratory testing, following up frequently with the patient and proactively referring to specialists are all essential elements of effective long COVID care.
If a patient suspects they suffer from long COVID or presents a variety of symptoms after having COVID-19, their assembled care team—which often starts at the office of their primary care provider—should first rule out a separate underlying illness. Health-care professionals need to find a balance whereby they maintain, when appropriate, a high index of suspicion for long COVID, without letting long COVID become a catchall diagnosis.
Knowing that long COVID can present as more than 200 symptoms affecting 10 organ systems, health-care providers find it challenging to pinpoint which ailments, if any, were a direct result of COVID-19. With so many individual symptoms, patients may see a range of specialists, calling for a high degree of collaboration between providers.
That there are other ailments masquerading as long COVID emphasizes the importance of seeing patients quickly and providing a thorough evaluation. Common long COVID symptoms like chest pain and heart palpitations could also be the presentation of some other, more emergent condition. As frustrating and debilitating as long COVID can be, it can mask worse diseases that might lead to costlier medical bills and a more rapid decline in a patient’s health—as well as a higher chance for litigation against physicians if these diagnoses are missed.
When signs of long COVID emerged in the summer of 2020, many doctors were skeptical. Even now—two years later—skeptics remain. Consequently, many patients feel that medical professionals are failing them. In the early 1990s, given limited research, some health-care providers did not yet believe that chronic Lyme was a real disease. Similar doubts have been expressed about long COVID. When health-care providers struggle with doubts about long COVID, they should remember that COVID-19 can result in something other than short-term symptoms or death. There’s another scenario—a third category of COVID-19 patients—and we need to accept that reality.
Dr. Zijian Chen is Assistant Professor of Medicine at the Icahn School of Medicine at Mount Sinai, and Peter A. Kolbert, Senior Vice President of Claim and Litigation services for Healthcare Risk Advisors, part of TDC Group
The guidelines suggested here are not rules, do not constitute legal advice, and do not ensure a successful outcome. The ultimate decision regarding the appropriateness of any treatment must be made by each healthcare provider considering the circumstances of the individual situation and in accordance with the laws of the jurisdiction in which the care is rendered.