Patients aren’t prepared for the cognitive effects of COVID-19 – neither are their doctors

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Forgetfulness, poor concentration, the feeling that something is simply “not right”. COVID-19 survivors often describe a range of worrying and debilitating neurological symptoms after their acute illness subsides. The term “brain fog” was coined to encompass these neurological complaints that patients too often dismissed or ignored.

Now new research confirms what they are telling us: 24 percent of COVID-19 survivors suffer from significant cognitive impairments that affect memory, executive function and processing speed.

Of course, patients don’t look for confirmation. You need a solution and support until that day. Unfortunately, we are even less prepared for these needs than for their acute illness, no matter how ill they were and how tense our health system was.

Your recovery requires cross-sectoral collaboration among practitioners in healthcare, education, and industry. But that does not yet exist on a meaningful scale.

To Long COVID, add the fact that assuming historical data on severe respiratory failure is valid, 40 percent of seriously ill patients with COVID-19 will be unemployed a year after their illness. Not out of choice, but out of consistency.

It has been almost a quarter of a century since researchers first published data showing that 75 percent of patients with acute respiratory distress syndrome (ARDS) had measurable cognitive impairment one year after the disease. Follow-up research has shown that psychological stress, financial stress, physical deconditioning and isolation are also alarmingly common. Even before COVID-19, we did not adequately rehabilitate and support the vast majority of these patients who had difficulty returning to “normal” both at work and at home.

Here’s the dirty secret: if we define success by whether a critically ill patient survives to hospital discharge – as most clinical trials do – our healthcare system is improving every year. If we define it as complete restoration, we are failing. To remedy this, the health system needs to play a much more active role in the survival of these patients, but its efforts will be ineffective without collaboration with private and public institutions in other areas.

Too many patients find that their illness creates a cascade of crises like the one I recently discharged from intensive care to a rehabilitation center. He hadn’t gone for months and felt unrecognizable to his former self. He had been the only source of income for his family and now he had no idea how to cover their mortgage. He would not be returning to his previous job in construction anytime soon, if at all. We both understood that his future was precarious.

These problems are well beyond the training or comfort of most healthcare workers. Multidisciplinary clinics and collaborations dedicated to addressing the challenges of critical illness and COVID-19 survivors are growing rapidly, in part because of the attention that COVID-19 has paid to the challenges of survival. However, due to funding constraints and isolated programs, the challenge of integrating non-medical needs with clinical services on a large scale remains.

I recently spoke with a director of the Texas Workforce Commission’s vocational rehabilitation program, a program designed to help people with disabilities find and retain jobs. The program is exactly what someone with a new health disability needs and is located less than a mile from our hospital. But she told me that most patients didn’t find it until years after they were discharged from a serious illness because there was no systematic effort to connect patients from our hospital to their facility.

Reform needs to focus on both culture and funding. Culturally, the US has long since put its social benefits on hold, both in practice and in budget, so we often face a “wrong pocket” problem: Investing in people through the health system brings long-term benefits, but the health system is t financial beneficiaries, so it is difficult to obtain funding.

Despite growing evidence that multidisciplinary programs could reduce readmission after critical illness and improve employment prospects, these programs rely on institutional goodwill or research grants for survival as 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 were filled with adults in their forties, not seniors at risk. These patients will not be discharged to an assisted living facility and a retirement waiting account. They return to face rent, loved ones, and responsibility. And they will fight.

To help our critically ill COVID-19 population resume “life as it known it” requires both the commitment of federal, state and local governments as well as new methods of cooperation between those who work in the fields Education, industry and disabled people are active. Arguments about vaccines are far less useful than preventing disease and helping its survivors.

We have long since understood that relaxation means more than relief. It is time to put these findings into action and help build the ramp to bring our patients back to what they would call a normal life.

Marissa Wagner Mery, Dr.


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