The Challenges of Post-COVID-19 Care – The New Yorker

Among the patients I care for at the hospital is a young woman recovering from COVID-19. To keep her blood oxygenated, she needs a device called a non-rebreather mask. The mask is connected by a tube to a one-litre translucent bag, which is in turn connected to an oxygen cannister in the wall; when she exhales, one-way valves shunt expired carbon dioxide into the room and prevent her from rebreathing it. Its considered an advanced oxygen-delivery device, because it supplies more oxygen than a simple nasal cannula; it is also cumbersome and uncomfortable to wear. But the mask, my patient says, isnt her biggest problem; neither is her cough or shortness of breath. Her biggest problem is her nightmares. She cant sleep. When she closes her eyes, shes scared she wont wake up. If she does fall asleep, she jolts awake, frenzied and sweating, consumed by a sense of doom. She sees spider-like viruses crawling over her. She sees her friends and family dying. She sees herself intubated in an I.C.U. for the rest of time.

For many people infected with the coronavirus, the disease is mild. Asymptomatic infection is thought to be relatively common; here in New York, most people who need to be hospitalized have been discharged within days. But when the infection is bad, its really bad. For reasons that arent entirely clear, COVID-19 patients who need to go on ventilators generally need them for much longer than people with other respiratory problems. For patients with severe emphysema, the average duration of mechanical ventilation is about three days; for those with other acute respiratory distress syndromes, its around eight. At our hospital, most of the COVID-19 patients who have needed ventilators have needed them for weeks. Extubation has been no guarantee of liberation: often, weve had to reinsert the tube within days, if not hours.

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Prolonged intubation creates all sorts of problems. While patients are intubated, they need powerful sedative medications; many also receive paralyzing drugs to keep their reflexes from fighting the ventilators tube. (Some must be physically restrained to prevent them from pulling out catheters and tubes in their delirium.) Patients who survive intubation often find themselves profoundly debilitated. They experience weakness, memory loss, anxiety, depression, and hallucinations, and have difficulty sleeping, walking, and talking. A quarter of them cant push themselves to a seated position; one-third have symptoms of P.T.S.D. A 2013 study of discharged I.C.U. patients, many of whom had been intubated, found that, three months after leaving the I.C.U., forty per cent of them had cognitive test scores one and a half standard deviations below the meanroughly equivalent to the effect of a moderate traumatic brain injury. A quarter showed cognitive declines comparable to early Alzheimers disease. The longer patients were in the I.C.U., the worse the consequences became.

The joy we all feel when patients at our hospital survive acute COVID-19 is followed, quickly, by the acknowledgment that it could be a long time before they fully recover, if they ever do. Many will suffer through months of rehabilitation in unfamiliar facilities, cared for by masked strangers, unable to receive friends or loved ones. Families who just weeks ago had been happy, healthy, and intact now face the prospect of prolonged separation. Many spouses and children will become caregivers, which comes with its own emotional and physical challenges. Roughly two-thirds of family caregivers show depressive symptoms after a loved ones stay in the I.C.U. Many continue to struggle years later.

Lindsay Lief, a critical-care physician at my hospital, runs a clinic for patients who have left the I.C.U., including those suffering from whats known as post-I.C.U. syndrome. Lief got the idea for the clinic years ago, after caring for a forty-year-old woman from New Jersey who developed a serious infection, followed by profound septic shock. In the I.C.U., the womans kidneys shut down; she needed dialysis; she couldnt breathe. She was intubated, extubated, intubated, extubated. When, after weeks of treatment, she was finally in stable condition, Lief began thinking about what it would be like for her to leave the hospital and return home. This lady had such a traumatic I.C.U. course, she said. And Im going to send her back to Jersey with no supportjust a few papers about what we did? That seemed crazy.

When Lief started the clinic, she saw patients by herself, most several weeks out from discharge. Lief would walk them through what had happened in the hospitalfor many, it was a blur. Shed screen them for depression, anxiety, and P.T.S.D., and assess how they were managing at home. Were they gaining back the weight theyd lost in the I.C.U.? Had their sleep improved? Shed run through the medications they were taking and stop the ones that were no longer needed. Over time, she added psychologists, therapists, nutritionists, pharmacists, and social workers to her team.

We try to offer holistic, whole-person care, Lief told me. Sometimes patients have already seen twenty doctors. Theyve had their scars, lungs, and eyeballs examined, but no one has asked, How are you doing with all this? Patients, she learned, feel frustrated by their dependence on others. They cant return to work; theyre forced to take taxis because they cant climb the subway stairs. Others have trouble paying bills and keeping track of medical appointments. Often, what these patients need is not a doctor, Lief said. They need physical therapy, occupational therapy, social interaction, case managers, financial planners. They need people to help them get their lives back.

To contend with the flood of patients who will be extubated in the coming weeks, were planning to create a COVID-19 survivors unitessentially an in-patient version of Liefs outpatient clinic. The unit will bring together clinicians from various backgrounds: hospitalists, pulmonologists, rehab specialists, psychiatrists, dieticians, therapists. It will develop COVID-19-specific protocols, which we hope will help patients progress to a fuller recovery. Patients will receive daily pulmonary rehaba stepwise approach to reducing oxygen support and slowly building strength and endurance. Theyll learn breathing techniques and get help with gadgets they can use to clear mucus from the lungs. Some will be shown how to cough better. Physical and occupational therapists will help them recover motor skills that may have diminished during their hospitalizations; psychiatrists and nutritionists will help with mood and food. Many patients, because they are too sick, or need oxygen, or because no rehab facility will accept them, will need to spend days or weeks recovering in the hospital. The best thing we can do is create a home-like environment, Lief told me. The whole point is to help them stop being patients and start feeling human again.

We tend to think of extubation as the point when a patient begins breathing independently. But, in fact, its possible to be extubated while still depending on a ventilator to breathe. If the thick intubation tubeinserted into the mouth, pushed through the vocal cords, and resting in the lungsis left in too long, it can damage surrounding tissue; when that time comes, doctors make a small hole in the front of the neck, just below the thyroid gland, and insert a thin tracheostomy tube directly into the windpipe. This tube allows for a permanent connection to a ventilator. The patient has been extubated, but is no closer to his pre-coronavirus life.

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The Challenges of Post-COVID-19 Care - The New Yorker