Many patients have fallen so ill that they require ventilators to support their failing lungs. While the machines can’t save all patients stricken with COVID-19, they continue to assist many back from the brink of death. But a life saved does not mean a life that is the same after disease.
Patients who needed mechanical breathing support are among the hundreds of UCHealth patients who had recovered from COVID-19 by mid-April. Most of those critically ill individuals suffered from acute respiratory distress syndrome (ARDS), a condition in which the tiny air sacs of the lungs fill with fluid, choking the delivery of oxygen in the bloodstream.
Advanced pulmonary support techniques originally developed at the University of Colorado School of Medicine continue to help many patients survive, but getting back to the lives they led before they fell ill will be a challenge, said Dr. Sarah Jolley, assistant professor of Pulmonary Sciences & Critical Care Medicine at the University of Colorado School of Medicine.
Jolley said studies of patients who have recovered from ARDS and other conditions that required lengthy ICU stays show that they often face long-term limitations that linger long after they breathe better. These include physical weakness, cognitive problems and emotional challenges, collectively called PICS (post-intensive care syndrome).
Long recovery road
The cluster of issues show just how serious a step it is to put a patient on a ventilator. Medications such as neuromuscular blocks and corticosteroids can be toxic to nerves and muscles, leading to profound physical weakness, especially when patients are immobilized for long periods, Jolley said. Sedatives patients receive to keep them comfortable during intubation can cause confusion and delirium and cognitive deterioration with symptoms similar to those of traumatic brain injury and Alzheimer’s disease. Medications and the experience of being in a netherworld of illness and intensive treatment can lead to anxiety, depression and post-traumatic stress disorder (PTSD).
“Even though we get people better [physically], there is a new spectrum of illness that comes with post-ICU syndrome,” Jolley said. “These long-term impairments can last for years beyond the initial hospitalization.”
Help from many corners
Jolley is now part of an organized effort to take on these problems. She leads a multidisciplinary group of providers that will staff a post-intensive care clinic at UCHealth University of Colorado Hospital on the Anschutz Medical Campus. The clinic, now in development, already has support from pulmonology; physical, occupational and speech therapy; pulmonary rehabilitation; physical medicine and rehabilitation; and psychiatry.
The clinic plans eventually to help all patients who survive lengthy stints in the ICU and have suffered respiratory failure, shock and delirium, Jolley said. But the immediate focus will be on COVID-19 patients who required intensive care, especially ventilator support. These patients may face challenges beyond the PICS cluster, she added. That’s because the SARS-CoV-2 virus, which causes COVID-19, requires isolation from friends and family and the emotional support they could provide during a lonely and frightening stay in an unfamiliar environment.
“Usually when a patient is acutely ill, it is a time to rally social supports and lean on other people to cope,” said Dr. Alexandra Chadderdon, assistant professor of Psychiatry at CU, and a member of the post-ICU clinic group. COVID-19 severely frays those lifelines, she added, especially for patients who don’t have access to phones or video chats.
“The common image we have in our minds of holding the hand of a sick loved one in the hospital is sadly not a reality in this situation,” Chadderdon said.
Support from a distance
Normally, of course, these patients would get their post-ICU care in a hospital clinic or rehabilitation facility. SARS-CoV-2 has made that difficult, if not impossible, at least for the time being, so the group is working on providing services through telehealth. For now, providers will assess each patient remotely and consult with one another to decide on an appropriate plan of care. The eventual goal is to create a physical space where providers work together and meet patients face-to-face, probably in the Pulmonary Clinic at UCH, Jolley said.
Fortunately, important platforms for providing virtual visits are in place. Patients with a UCHealth My Health Connection account will be able to make a video connection on their computer or mobile device and speak with their providers. Jolley said the Pulmonary Clinic is already conducting telehealth visits. In addition, the Psychiatry Department has largely converted to telehealth platforms, such as Microsoft Teams and Zoom, said Dr. Thida Thant, assistant professor of Psychiatry at CU.
Details are still being worked out, but Thant and Chadderdon are working with psychiatry colleague Dr. Christopher Dobbelstein to implement virtual group support sessions to address the constellation of emotional and mental health issues linked to PICS.
The clinical foundation is in place through the Psychiatry Consultation for the Medically Complex service (PCMC), housed in the UCHealth Outpatient Psychiatric Clinic, Thant said. The PCMC includes a Coping with Illness group that offers support for patients struggling with chronic medical issues.
Stressing that many decisions still have to be made, Thant said that the post-ICU clinic will likely refer recovering COVID-19 patients to the PCMC, where she and Dobbelstein would evaluate them and recruit them into the virtual support group. Thant and Chadderdon would then co-facilitate group therapy sessions remotely.
In normal situations, Chadderdon said, support groups connect patients with similar experiences and help to ease feelings of isolation and stigma that often accompany disease. The groups have “healing power” that is “far more powerful than anything I could say as a group facilitator,” she said. But the groups may be especially valuable for immunocompromised COVID-19 patients, who will have to remain homebound, as well as those who live far from the Anschutz Medical Campus or have problems finding transportation. Remote visits could also help to decrease pressure on hospital resources, particularly clinical space, she added.
Battle for breath
Remote patient visits are also a necessity for the Pulmonary Rehabilitation team, another important piece of the recovery mosaic for post-ICU COVID-19 patients. With the rehabilitation services modified to follow Centers for Disease Control and Prevention recommendations for outpatient care, the staff is now redirecting time between helping with inpatient care and providing remote coaching to current patients on medications, inhalers, breathing techniques, oxygen use and other issues, said Alexandra Worl, Pulmonary Rehabilitation coordinator with UCH.
Worl said she anticipates her team providing the same kind of services via telehealth to COVID-19 patients, but she added that delivering pulmonary rehabilitation remotely poses some challenges. For example, some patients may not have a pulse oximeter to measure oxygen levels. That makes assessing their condition safely more difficult. On the other hand, she is confident that patients will be able to learn effective techniques to increase their oxygen levels, clear mucus and manage symptoms like shortness of breath via video from respiratory therapists.
These are skills that will be crucial for COVID-19 patients who spent time on ventilators, Worl said. She said that in her experience, patients recovering from ARDS frequently experience long-term problems, including physical deconditioning, pain, anxiety and depression. ARDS can also cause thickening of the tissue that separates the air sacs and capillaries in the lungs, slowing the flow of fully oxygenated blood.
“Picture a colander that gets plugged up with bits of sand,” Worl said. “Less oxygen gets through after injury.” The result: difficulty breathing, a trigger for all the other challenges. For these patients, applying oxygen therapy acts like “turning up the flow of water” and forcing more oxygen through the tight colander mesh, as Worl put it.
New world for post-ICU care
The skills and strategies respiratory therapists use in pulmonary rehabilitation remain the same, but the traditional ways of using them are on hold, at least for now. That has consequences. Worl acknowledged that there is no real substitute for the care patients with lung problems are provided in the once-humming but now-shuttered pulmonary rehabilitation gym.
“Part of what works in pulmonary rehabilitation is giving patients a forum to express their feelings and share them,” she said. “A lot of times that’s done in a group environment. Our patients are often each other’s best sounding boards because they’ve been through it and can share what they did and get encouragement. One-on-one care is not the same as connecting with each other.”
Indeed, the COVID-19 pandemic has sorely tested people’s connections to one another in homes and hospitals alike. Jolley believes that it’s the job of post-ICU clinic providers to consider how to maintain those connections and provide patient care in new ways, even after the threat of the virus eases.
“We have to think about how to get better at delivering post-ICU care in the setting of both COVID and non-COVID disease,” she said. “This is causing us all to think about different ways to deliver our usual care.”