Forgetfulness, an inability to concentrate, a feeling that something is just “off.” COVID-19 survivors often describe an array of disquieting and disabling neurologic symptoms after their acute illness abates. The term “brain fog” was coined to encompass these neurologic complaints that patients felt were too often dismissed or ignored.
Now, new research confirms what they are telling us: 24 percent of COVID-19 survivors experience significant cognitive impairment that affects memory, executive function and processing speeds.
Of course, patients aren’t looking for affirmation. They need a solution and, until that day arrives, support. Unfortunately, we are even less prepared to meet these needs than we were their acute illness, no matter how sick they were and how stretched our health system has been.
Their recovery will require multisector collaboration between practitioners in health, education and industry. But this does not yet exist at any kind of meaningful scale.
To Long COVID, add the fact that assuming historical data on severe respiratory failure holds, 40 percent of COVID-19’s critically ill patients will be out of work one year following their illness. Not by choice, but by consequence.
It has been almost a quarter century since researchers first published data showing 75 percent of patients with acute respiratory distress syndrome (ARDS) suffered from measurable cognitive impairment one year after illness. Follow-up research has shown that psychiatric distress, financial stress, physical deconditioning and isolation are also frighteningly common. Even pre-COVID, we weren’t adequately rehabilitating and supporting the vast majority of these patients, who struggled to return to “normal” both at work and home.
Here’s the dirty secret: If we define success by whether a severely ill patient survives to hospital discharge — as most clinical trials do — our health system is improving every year. If we define it as a full recovery — we’re failing. To fix this, the health system needs to play a far more active role in these patients’ survivorship, but its efforts will be ineffective without collaboration with private and public entities in other fields.
Too many patients find their illness provokes a cascade of crises, like one I recently discharged from the ICU to a rehabilitation center. He hadn’t walked in months and felt unrecognizable to his former self. He had been the sole source of income for his family, and now had no idea how to cover their mortgage. He wouldn’t soon — if ever — be returning to his previous work in construction. We both understood his future was precarious.
These problems lie far beyond the scope of most of the health care workforce’s training or comfort. Multidisciplinary clinics and collaboratives dedicated to easing the challenges of critical illness and COVID-19 survivors are growing rapidly, in part due to the attention COVID-19 has brought to the challenges of survivorship. But because of funding shortages and siloed programs, the challenge of integrating non-medical needs with clinical services at scale persists.
I recently spoke with a leader in the vocational rehabilitation program at the Texas Workforce Commission, a program designed to help individuals with disabilities obtain and retain jobs. The program is just what someone with new health-related disabilities needs, and it’s located less than a mile from our hospital. But she told me that most patients only found it years after discharge from severe illness because there are no systematic efforts to connect patients from our hospital with her institution.
Reform must focus on both culture and funding. Culturally, the U.S. has long siloed its social services, both in practice and in budget, so we frequently face a “wrong pocket” problem: Investing in people via the health care system provides long-term benefits, but the health care system isn’t the financial beneficiary, so funding is difficult to obtain.
Despite burgeoning evidence that multidisciplinary programs following critical illness might reduce readmissions and improve employment prospects, these programs rely on the benevolence of institutions or research grants for their survival because remuneration does not cover expenses.
An overhaul is long overdue, and there has never been a better time. During the Delta variant COVID-19 wave, our hospital beds filled with adults in their 40s, not vulnerable seniors. These patients aren’t being discharged to an assisted living facility and a waiting retirement account. They are returning to face rent, dependents and responsibilities. And they will be struggling.
Helping our critically ill COVID-19 population resume “life as they knew it” will require both a commitment from federal, state and local governments and new methods of collaboration among those working in education, industry and disability advocacy. Arguments over vaccines are far less productive than preventing illness and supporting its survivors.
We have long understood that recovery means more than discharge. It’s time to turn that insight into action and help build the ramp to get our patients back to something they would call a normal life.
Marissa Wagner Mery, MD, MBA is a critical care physician, anesthesiologist and assistant professor at Dell Medical School at the University of Texas at Austin, and a public voices fellow with The OpEd Project.